PhD young adult carers thesis

Who cares for young adult carers? A mixed methods approach to young adult carer’s wellbeing, mental health and isolation in the North-West of England John Horsfield Thesis presented for the degree of Doctorate in Psychology The Open University January 2014-2016  Table of Contents ABSTRACT 4 Acknowledgements 1 1.0 Introduction 2 2.0 Literature Review 8 2.1 Becoming a carer 8 2.2 Defining young adult carers 10 ID Cards example - Access to Action (A2A) Card 15 Powys Young Adult Carers Support Service Case example 16 2.3 Mental health of carers 18 2.6 Positive and Negative impacts of caring 32 Positive Psychology and Carers? 35 Social inclusion vs social exclusion/isolation of carers 39 Social exclusion and mental health 41 Case example - Open University in Wales: Access to Education for Carers Project 47 Case example – NIACE Case study (2014) – York College 47 Theories of Care 53 Proposed Research Objectives 54 3.0 Methodology 56 3.1 As a person and a researcher 56 3.2 As an informed researcher 57 3.3 As a research practitioner 58 3.4 The journey towards Mixed Methodology and triangulation 58 3.5 Rationale: 60 3.6 Qualitative Research 61 3.7 Semi-Structured Interviews 62 3.8 Focus groups 65` 3.9 Thematic analysis 66 3.10 Quantitative Research 66 3.11 Self-completion Questionnaire 67 3.12 Questionnaire requirements outline 69 3.13 Mixed method approach 74 3.14 The research Designs 75 4.0 Phase 1 – Semi-structured interviews + Thematic analysis 1 5.0 Phase 2 – Focus group collaboration and analysis 38 6.0 Phase 3 – Self-report questionnaires and statistical analysis 50 7.0 Discussion 65 7.1. Let us review the aims and objectives of this project 65 7.2 The need to engage partner organisations and collaboration 68 7.3 The benefits of the social/cultural level 69 Policy implications 86 8.0 Conclusion 97 9.0 Recommendations 103 9.1 What services and support are needed? 104 10.0 Appendices 109 11.0 Bibliography: 110  ABSTRACT The aim of this study is to target young adult carers in the North-West of England utilising mixed methods including semi-structured interviews, focus groups and questionnaires to highlight mental health, wellbeing and isolation as a result of caring. 18 carers were interviewed and then included in the four focus group consultations; 181 carers returned the 61-item questionnaire giving their opinion on the key topic areas. The questionnaire was tested for significance, reliability and analysis of variance across all 61 items and two variable totals of wellbeing and support. Chronobach analysis was reported as being high with both scales showing high internal consistency. Significance was reported as below p.01 and interaction was supported between levels of wellbeing and the support the carers reported in the questionnaire. The aim of investigating the CWS-v2 wellbeing questionnaire on a specific group of young adult carers in the UK provided interesting statistical outcome and qualitative answers in the final 12 questions. For theoretical models the Treasure et al (2007) carers coping model and Cherry MG (2013) carers Psychological model was considered. The carers were involved in all three stages of the process and provided feedback on the interview guide, focus group structure and questionnaire itself, which led to a transformative process and enabled their involvement in guiding the research including a new theoretical model from Treasure et al and Cherry MG. The interviews and focus groups raised important themes for the questionnaire stage design, which provided essential insight into the current state of young adult carers in the UK and recommendations for future research.  Acknowledgements To the young adult carers who willingly gave up their time to share their experiences, I am grateful and touched by their openness and direct sincerity in their discussions. Their personal stories influenced my decision and presentation of the research I will always remember how their stories were infused with emotion, honesty and integrity. Thanks to my supervisors and colleagues for their guidance, support and advice. To my friends and family, thank you for being confident, tolerant and understanding on many occasions. I would like to thank Treasure J and Cherry MG for their support and help in understanding the models, Dr Alan Quirk for sharing the CWS Questionnaire which allowed this research to proceed, Dr Joyce Statham for her thesis and support which guided my thesis as a template of how to approach carers research. For all the contacts throughout the charities and alliances I have contacted which allowed this research to take form and shape through their help, I am grateful. In memory of Alan Roberts (1942-2015) a caring, sensitive and beautiful person who showed me full devotion of helping others and placing them first. He cared for all ages and abilities through selfless commitment, steadfast resolve and principles. His constant support and encouragement supported my pursuit of this thesis and I wish to acknowledge his influence on this research and my life. “There is no exercise better for the heart than reaching down and lifting people up.” ― John Holmes  1.0 Introduction Carers form an essential network of people providing care to millions of people in the UK every day. Currently, there are estimated to be over seven million carers in the UK and there is projected to be a 60% increase within the next thirty years (Carers trust, 2014). Within this demographic, young adult carers defined as aged 16-25, in current policy are twice as likely not to be in education, nor in training (NIACE, 2013) and are instead facing mental health and wellbeing demands (MIND, 2014; RETHINK, 2012). Currently, it is estimated that there are 290,364 (Carers UK, 2014) young adult carers in the UK providing caring for ill or disabled family members. Although recent research and national policy have changed to include these young adult carers there still remains a lack of a theoretical framework and consultations specifically targeted to their opinions and wellbeing. 'These children carry out - often on a daily basis – a range of tasks including domestic chores, household management duties, care of siblings and intimate, nursing type responsibilities. Indeed, one of the key recommendations in the government’s National Carers’ Strategy (DH, 2008) is to identify young carer’s problems early and to encourage them to come forward for help and support.’ (Aldridge et al 2010) Additionally it is held that, 'indications from recent national surveys that only 18% of young carers receive an assessment of their needs' (Dearden and Becker, 2004). Less are able to access and are encouraged to gain on going support especially when coping with work and studies at the same time as caring. (Becker, et al, 1998; Dearden & Becker, 2000; Frank, 1995; Aldridge et al 2010). There has been an increase in academic and policy driven reports focusing on the growing caring demand in the UK including policy initiatives and national changes in recognition of carers specifically (HM Government 2008, 2013, DH 2010a, Welsh Government 2012; Scottish Government, 2013) with the changes contained? within the care plan and qualitative specific research by education and institutional research (Becker et al, 2000, 2004, 2010; NIACE 2002, 2006, 2010). Young adult carers still remain under-represented however, not only in research but also in support policies when they are recognised as adults when turning 16 years of age and many support functions cease especially within education and working environments. Coping is defined as ‘constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person’ (Lazarus & Folkman, 1984, p. 141; Pakenham et al 2007). 'Resilience refers to peoples’ positive capacity to cope with adversity' (Skovdal et al 2009) and provides a useful conceptual backdrop for this study; Skovdal himself is recorded as being a carer at the age of fourteen and finding it taught skills, self-determination and a positive caring attitude. This ability to cope and adapt with the constant pressures is an important consideration to better understand the health mechanisms to support young carers’ needs. There exist limited studies which examine psychosocial predictors of adjustment in young adult carers within an established theoretical framework; indeed in reviewing the literature, it became abundantly clear that young adult carers 'have been almost totally ignored in research' (Levine et al, 2005; Ryan 2010). Two previous studies by Dearden and Becker (2000, 2004) highlight the impact of very poor school attendance and attainment for young adult carers; emotional impact and mental health impact. Similarly, Yeandle and Buckner (2007) found that 'Among young adults aged 16-24, caring reduces the likelihood of being a student and thus participating in further or higher education'. Two reports by young carers projects (Action for Young Carers, 2005; Barnardos, 2007) found that many young adult carers think that their 'caring responsibilities will be a barrier' to accessing employment. 'To date the young carer research has not been theory driven and consequently this framework has not been applied, although it has been used to explain the process of adaptation to stress associated with having a parent with an illness/disability’ (Langrock, Compas, Keller, Merchant, & Copeland, 2002)' (Pakenham et al, 2006). 'Although several surveys have been conducted (Dearden & Becker, 1995, 1998, 2004), most of the young carer research is descriptive and has relied on qualitative methods (e.g. Aldridge & Becker, 1994; Becker, 1995; Dearden & Becker, 2000; Frank, 1995). Further, much of this research has been conducted in the United Kingdom by Becker and colleagues (e.g. Aldridge & Becker, 1994; Dearden & Becker, 1995) who have in the main recruited samples from young carers attending support services (Newman, 2002).'(Pakenham et al, 2007). For those who are not attending such services or receiving support there remain serious questions on approaching them in order to make them aware of their rights and need of support/and available support. There remains a significant area of analysis and investigation possible to focus on individuality within young carers and to explore their personal difficulties and coping strategies. Young adult carers still remain under-represented not only in terms of research but also in support policies when they are recognised as adults upon turning 16 years of age when many support functions cease, especially within education and working environments. This study aims to focus specifically on the young adult carers’ wellbeing/mental health and isolation as a result of their caring and link it with collaborative action research to allow their voice to be heard through the interviews and focus groups, to empower them through the questionnaires by reaching those isolated or not comfortable with individual interviews and link it with theoretical frameworks from previous studies. In these previous studies, young adult carers have remained up until recently overlooked and at best grouped with the adult carers group resulting in their voice remaining generalised instead of distinct, individual and specific when relating to their own wellbeing. By utilising definitions of young adult carers developed by recent research, this study hopes to contribute to the action research already taking place and further focus it to positive outcomes relating to mental health/wellbeing and isolation. Another challenge is recognising and approaching the young carers themselves which is twofold in nature; many of them personally do not consider themselves to be carers and secondly, the definition of age varies in the UK council sector. There has however been progress in recognising these individuals within government and public policy (Deardon and Becker, 2004; Abraham and Aldridge, 2010) through publications aimed at awareness and exposure of the issues faced. At Loughborough University, impressive progress has been made in linking with local and national support agencies aimed at supporting carers and young carers and working in collaboration with them and carers’ agencies to raise awareness. (Aldridge et al, 1993; Aldridge et al, 1994; Aldridge et al, 2008; Aldridge et al, 2010). This argument is furthered to include the following benefits: 'Anecdotal evidence also suggests, however, that the caring role may result in positive outcomes including enhanced skill development, maturity, independence, self-efficacy, self-reliance, self-esteem, sensitivity and empathy for others and a fostered capacity to accept responsibility' (Kornblum & Anderson, 1985; Segal & Simkins, 1993). 'Young carers also report benefits (e.g. perceived maturity and acquisition of skills) from their caregiving roles’ (e.g. Kornblum & Anderson, 1985; Segal & Simkins, 1993; Pakenham, 2005b; Pakenham et al, 2007). It should be noted that the majority of the research on coping and stress relates to adult care-giving (Goode, Haley, Roth, & Ford, 1998; Pakenham, 2002) but increasing focus in recent years have highlighted the problems faced by young carers and specifically the emerging adult young carers (18-24) (Becker and Becker, 2008) which indicated that their needs were not being supported. According to Dowman (2009) ‘Becker and Becker felt that it was important to separate Carers aged 16-17 from those aged 18-24 as their experiences and needs were very different as well as services that are available to them in the UK.’ A report commissioned by Young carers research projects Lewisham 2009 found that age also made a significant influence on eligibility of support; their findings showed that members could not attend support services upon turning 18 years of age in the local community. Other reports have indicated that young carers are not aware of emerging support services and this indicates that young carers are being isolated, 'Some young adult carers in our sample were struggling with a reduced level of support from their young carers project since reaching 18' (Becker and Becker 2008). All these factors lead into the capacity for the young carer to continue and support not only themselves but also that person who relies on them for quality and continuance of life. As a duty of responsibility and ethical moral compulsion we should continue further research in this area to ensure that these young carers and not isolated and overlooked by our academia and as a nation. This study aims to highlight qualitative themes from the young carers and to give them a voice and link this with any theoretical models to give further dimension and strength to their need for support and to understand their capacity for coping and how this relates to their individuality. ‘In the context of young carers and their families, research needs to gather the views and experiences of children as well as the perspectives of professionals who provide services, to check out the extent to which views and experiences are unique or common, to make sense of them and to identify clearly messages and implications for policy and practice.' (Becker, 2005: 3) 'For these reasons, it is widely reported that research on young carers must address the ‘invisibility’ of this population (Thomas et al. 2003). Previous empirical studies have established that much caring can be ‘covert’ (Banks et al. 2002) or ‘hidden’ (Gray et al. 2008; O’Connellet al. 2008), (Kennan et al, 2011). The action research for this study was developed at dissertation level to raise awareness for the young adult carers in the local area which has allowed a relationship of trust and respect to develop; consequently this has led to a number of partnerships with other university campuses, charities and social enterprises.  2.0 Literature Review This chapter will deal with the impact of caring and its meaning for the young adult carers. Caring as a concept is difficult to determine (Parker 1990c, Kyle 1995) and is least understood by the professionals themselves (Dunlop 1986, Morse 1990). The consideration of caring has to involve the culture and society it is rooted in for the carers and their reasons for caring also. 2.1 Becoming a carer Previous studies such as Becker (2002, 2003) and Aldridge (2003) which investigate specifically intensive qualitative evidence demonstrate that caring can result from an immediate need or crisis arisal. This specific need is also revealed to arise from limited alternatives to the caring duty. ‘Aldridge & Becker (2003) point out that a survey carried out by the NSPCC in 2002 indicates that approximately 4% of all 18-24 year olds will have regularly cared for an ill or disabled relative during their childhood. In a recent analysis of the health status of young and elderly informal carers in the UK, findings indicated that of all children aged between 5 and 15 years of age, 1.4% provided informal care, including 53,000 boys and 61,000 girls. (Doran, Drever & Whitehead, 2003). Of these, 18,000 provided 20 hours of care or more a week and nearly 9,000 provided at least 50 hours.’ (Halpenny et al, 2004) The definition of caring used in Caring Together, by local authorities and Health Boards either in the same form, or adapted, maintains that: ‘Carers provide care to family members, other relatives, partners, friends and neighbours of any age affected by physical or mental illness (often long-term), disability, frailty or substance misuse. Sometimes the cared-for person will have more than one condition. Some carers care intensively or are life-long carers. Others care for shorter periods. The carer does not need to be living with the cared-for person to be a carer. Anybody can become a carer at any time, sometimes for more than one person. Carers are now, and will remain, fundamental to strong families and partnerships and to resilient and cohesive communities.’ (Scottish consultation, 2014) It is recognised that the initial motivation and transition to caring is deeply personal and thus integrated within the carers point of view. The wellbeing and mental health impact of caring has its roots in the initial decision and continued motivation to continue/uphold/remain caring; a crucial element which must be considered carefully before moving on to define the young adult carer’s perspective.  2.2 Defining young adult carers Identifying young adult carers from the age of 16 - 25 is critical, as there exists a gap between the service reported by young carers within that age group and tailoring services and access suitable. Most young adult carers grow out of the service when turning 16 years of age as they no longer want to do the same type of activities as younger carers thus making the transition to adult carers group even more difficult. Defining young adult carers in the community and in terms of policy awareness is noted in a range of literature (Becker et al, 2003, Halpenny et al, 2004) and the distinction between young and young adult carers is now recognised at national and local levels. ‘We define young adult carers as people aged 18-24 who provide or intend to provide care, assistance or support to another family member on an unpaid basis. The person receiving care is often a parent but can be a sibling, grandparent, partner, own child or other relative who is disabled, has some chronic illness, mental health problem or other condition (including substance misuse) connected with a need for care, support or supervision.’ (Carers Org, 2014). This definition is further expounded upon to include other aspects albeit just as important in considering whether a young adult falls within the scope of what constitutes a young carer……. ‘A young carer is a child or young person under 18 years whose life is affected in a significant way by the need to provide care for a family or household member who has an illness, disability, addiction or other care requirement. This may include a child or young person who provides direct personal care or who takes on a supportive role for the main carer. A young carer may carry out domestic tasks or may provide general, intimate or emotional care. These needs may arise on a regular or on an occasional basis. There is therefore a continuum of caring and as a result the service requirements of young cares will vary. It is important to differentiate between a level of caring that has largely positive consequences and a level of physical or emotional caring that impairs the child’s health, development or welfare.’ (Thomas et al, 2003) Clearly, there still remains a lack of consistency in defining and therefore recognition of young adult carers and as a result they remain under represented for the purposes of? academic, national and local policy. In 2013, Becker and Simpik (Carers UK, 2013) produced a report of the state of young adult carers in education which states that, a ‘total of 362 people viewed the survey and responses from 295 young adult carers aged 14–25 were analysed. This is the third in a series of reports to be published across 2013 and 2014 looking at issues related to school, college and university, employment, and those not in work or education’. The report revealed that young adult carers are struggling with a lack of support and almost half felt there was no recognition of them as a carer. (Becker et al, 2013) This invisibility of the young adult carers is still being reported in academia across the United Kingdom (Thomas et al, 2003; Kennan et al, 2011) and compounded by a lack of awareness of the carer’s definition across society and for the carers themselves. For carers there is an element of secrecy and protectiveness surrounding their experience which is reported in forms of bullying (Aldridge & Becker, 2003, pp 80-82; Morrow, 2005, p. 53) and experience being classed as different. Many young adult carers accept their duties as a natural part of their family unit and do not recognise or readily accept the term carer. It is generally agreed that official statistics of young carers do not include all young adult carers and out of those which are identified, only a very small proportion are assessed for support. Many reasons have been suggested in an attempt to provide justification for young carers not being identified, including blurred boundaries between adults and children’s services, lack of awareness of their own entitlements, reluctance to seek formal help, or not seeing themselves as carers. Becker (2004) has indicated that at least 6% of all children living in a family with illness and disability will be young carers; this does not include children caring for parents who misuse alcohol or drugs as the data are too unreliable. In addition children caring for parents with mental health problems often remain hidden for fear of family separation or child protection procedures being invoked; in practice it is likely that they also provide more care as packages of care have been inflexible, inconsistent and fragmented. As such, the data which has been collected so far in the examination of the experiences of young carers has relied on young carers in touch with either services or projects. This examination has been limited and inconsistent in providing adequate/satisfactory feedback to service providers and policy leaders (Aldridge & Becker, 2003, pp 80-82; Morrow, 2005, p. 53) Figure 1 – Carers Trust – Young adult carers publication (2012) (Reference from carers organisation, 2014)  Table 1 – Summary of findings from Young adult carers education report (Becker et al, 2013) • The 101 young adult carers who were in further or higher education showed that on average they provided a ‘Very high’ level of care2. • 39% rated their physical health as either ‘Just OK’ or ‘Poor’; and 45% reported having mental health problems. • Despite most respondents (79%) enjoying college or university, over half of them (56%) were experiencing difficulties because of their caring role. 16% were concerned that they might have to drop out of college or university. • Those who reported that they found college or university difficult had significantly higher caring responsibilities. • 75% of respondents informed college or university staff of their caring role. Despite this, 45% said there was no one who recognised them as a carer and helped them. Of those who did not inform college or university staff, the main reason for not doing so was that there was “no point”. • The majority of respondents (62%) had not had a formal assessment by a social worker or other health/social care professional. Almost a third (30%) believed they had not received good services as a young carer or adequate support for their families (31%). • 56% of respondents received a bursary to help with their studies, including 12 of the 17 at university. Only four respondents (4.6%, n=87) received Carer’s Allowance, and 13 (21%, n=62) were in receipt of some other form of benefit. • 60 of the respondents were currently attending a young carers or young adult carers service. Of these, almost all (95%) felt that their confidence had improved as a result and that they had more friends (87%). COPYRIGHT According to the Scottish and Welsh government’s consultation and strategies papers regarding carers (2010, 2012, 2013, 2014) the following issues were reported by young carers as being critical: • Raising awareness within schools and colleges about the potential impact of the caring role • Age appropriate information and better engagement by health professionals, including GPs and pharmacists • Suitable training for caring tasks • Improved access to transport and leisure opportunities, including more respite care provision • ID cards to help young carers identify themselves at school, collect prescriptions and access support services ID Cards example - Access to Action (A2A) Card The Access to Action (A2A) card is a new ID card aimed to help children and young people in Flintshire who are young carers, looked after children or care leavers. It was launched in June 2012, and is a collaborative initiative between Barnardo’s Cymru and Flintshire County Council. These groups of young people often find it difficult to explain their personal and family circumstances in situations such as school, college, council services, GP surgeries, and other health services. The intention is that the A2A card will enable them to receive recognition of status, and prompt access to services, without having to continuously explain their personal and family circumstances to different adults. Examples of when it may be used include: • To present if the young carer has been unable to complete homework, or is very tired at school due to the person they care for experiencing illness or requiring a lot of their support the previous day or night • To present at the social services reception desk when wishing to gain access to their social worker in order to avoid having to explain any personal details in a public environment • To present at pharmacies when collecting prescriptions for the person being cared for; in the event of their inability to respond to unplanned events such as an after school detention, due to specific transport arrangements they are committed to, care of other siblings after school or due to the responsibilities of their caring role • to present in order to support a request for, and access to, special arrangements, such as time in the school day to make a telephone call to the cared for person to make sure they are ok, or time to attend meetings and/or appointments. The idea for the A2A card came from the young people themselves. Young people from the Flintshire Young Carers, Looked after Children and Care Leavers Forums came together to work on the idea of the ID card which included creating the name, design and developing promotional material. The Children’s Commissioner for Wales has pledged his full support. Promotion of the card is being taken forward in three phases: • Phase 1 – roll out in Social Services and Education • Phase 2 – roll out in Health and North Wales Police; and • Phase 3 – wider roll out hopefully including leisure, transport and retail services. (Welsh Government consultation report, 2013) Powys Young Adult Carers Support Service Case example In 2010, Powys Carers Services set up a pioneering project in response to a pressing need for targeted support for young adult carers between 16-25years of age who were losing touch with existing support services. Over 140 young adult carers are registered with the aforementioned service, which was primarily based on the existing model of young carer support; a blend of one-to-one person-centred intervention, the provision of small informal group work sessions and regular respite opportunities. The service initially consisted of two Outreach Workers located within the Powys Carers Services Adults team, providing a ‘trusted adult’ role in the lives of young adult carers. The role of ‘trusted adult’ gradually evolved into the status of advocate. Following review and evaluation in 2012, the service now consists of three part-time Outreach Workers, who offer a broad advocacy service for young adult carers within an expanded Young Carers Support Team covering Montgomeryshire, Radnorshire and Brecknockshire. These three shire-based teams work within the original support model of one-to-one, small group and respite provision and benefit from an increased focus on awareness of the needs of transition. The service aims to achieve the following outcomes for young adult carers in Powys: Increased self-confidence and personal well-being Increased numbers of young adult carers in further education, training and employment Increased numbers of young adult carers engaged as volunteers in meaningful activities Better relationships with the people young adult carers care for Greater peer support and continuity of professional support Better joint working by Children and Adults Services and Primary Health Care Better communication between supporting organisations (Welsh Government consultation report, 2013) The National Institute of Adult Continuing Education (2013) published a report not only highlighting the shortcomings in research and support to young adult carers but clearly stating that there is no system to identify and capture data on young adult carers in education. Furthermore, the report reveals that caring responsibilities can impact negatively on academic results. ‘There needs to be co-operation between departments to ensure that support for young adult carers does not end when they leave school but continues seamlessly throughout their further education up to the age of 25’ (Niace, 2013; DofE, 2010) ‘and to raise awareness of the needs of young adult carers and their status as expert care givers’ (DofH, 2010). Indeed The Bridge Young Carers Durham and Durham County Council Young Carers have introduced a pilot scheme specifically aimed at providing young carers who carry ID Cards this form of recognition at school and college levels; thus constituting one example of recognition of carers in the wider community/ in further education?. “Carers often do not feel valued or recognised as expert and equal partners in care.” (Department of Health, 2010) There are short-comings in the data set investigating caring does not predict how the health and well-being of a carer may be affected (SCIE, 2005) due to the difficulties of assessing the impact of caring from the other socioeconomic variables, e.g., income deprivation, social exclusion, on young carers‟ experience, stigma and representation (SCIE, 2005)  2.3 Mental health of carers To begin with, it is pertinent to consider the meaning of ‘health’ from the outset for the purpose of providing a cohesive understanding of what is meant by mental health of carers. One definition of health is advanced by the World Health Organisation (1948:200) as being a ‘state of complete physical, mental & social well-being, not merely an absence of disease.’This definition is further expanded upon by Westerhof and Keyes (2009) who provide three core components of mental health: Feeling of happiness and satisfaction (emotional well-being) Positive individual functioning (Psychological well-being) Positive societal functioning (Social well-being) Another distinctive definition of health is to be found in Blaxter's survey of health and lifestyles (1983) which reveals a multiplicity of meanings of health and distinct differences according to age, gender and class. Her research identified six main definitions of health: health as not being ill health as a functional capacity health as physical fitness health as leading a healthy lifestyle health as a psychological concept Health as a reserve. Finally, Psychological wellbeing (PWB) is described as ‘‘the achievement of one’s full psychological potential’’ (Carr, 2004, p. 36). PWB is generally agreed to be multidimensional. Ryff (1989) identified six distinct components that represent the six-factor model of PWB comprising of: Self-acceptance (positive evaluations of oneself and one’s past life) Personal growth (sense of development and continued growth as an individual) Purpose in life (belief that one’s life is meaningful) Positive relations with others (existence of meaningful relationships with others) Environmental mastery (capacity to effectively manage one’s life and the surrounding world) Autonomy (a sense of autonomy) Although it is important to consider these definitions and components when reviewing the literature pertaining to the mental health of carers, it is equally important to appreciate the problematic nature of such definitions and components which are instrinsic in nature since they are uniquely imbedded in cultural and social bias and also meaning. Mental health is a recurring theme in the overall wellbeing of carers and is a psychological resource (Cherry et al, 2013). Carers report that there exists very little support for those with mental health concerns or issues and even less when caring for an individual with mental health problems (Layard, 2006; Age Concern and Mental Health Foundation, 2006). Although the stigma/problems/limitations associated with the current medical model of mental health have been challenged by organisations such as Mind, Rethink, Time To Change and other specific targeted programmes within the NHS it is unfortunately far from the universal approach that the positive psychology movement would advocate. Carers face constant demands arising from their provision of duties and service and are under pressure, strain and at times isolated. This is why it is imperative to provide them with the appropriate support they may require which may range from regular breaks, relief, recognition to support services such as befriending and counselling to aid their psychological health and wellbeing. The isolation felt by carers has been noted to have a detrimental effect on individuals and communities when they are ignored. The Mental health of carers often suffers due to being ignored or simply not empowered by communities and societies (Campbell et al, 2004; Becker, 2002, 2005, 2010). Jenny Douglas writes (2012) that user involvement in mental health is seen as key by some blurring ‘with “negotiated care”, “collaborative care”, “patient participation” and “person-centred care”’ (Anthony and Crawford, 2000, p. 426). This involvement in society the carers are in have a role to play on their mental health and in becoming more responsive to their community demands (Campbell et al, 2004). One example of this would be partnerships to assist the social circumstances of the carers relating to their wellbeing and Psychological health (Campbell, 2003) which allows an active citizenship role in social change and avoiding isolation (McKinlay et al, 2000; Leventhal, 1980). The neglect of .. has been somewhat acknowledged by the Scottish Government who have prposed the Eight Pillars model below providing one potential integrated support approach for dementia carers proposed by the Scottish Government (2013)  Figure 2 – Eight Pillars Model (Scottish Government, 2013) Copyright In 2013, a study conducted by carers UK and Carers Organisation involving 5000 participants, highlighted a number of specific issues, which remain a constant influence on the psychological health of carers. These include: Table 2 – Carers Organisation Health impact Evidence findings (Carers org, 2014, P.09) > Full-time carers are more than twice as likely to be in bad health as non-carers > 80% of carers say caring has had a negative impact on their health > 50% of carers say they have experienced depression after taking on a caring role > 61% of carers say they are at breaking point > 1 in 5 carers receive no practical support > Despite an ongoing rise in the number of carers in the UK and sharp rises in the numbers caring full-time, the number receiving carers’ assessments and carers services is falling > 175,000 children under the age of 18 are providing care. COPYRIGHT The Young adult carers reports from Loughborough University and carer’s organisation (Becker et al, 2013) revealed a high prevalence of self-reported mental health issues in the sample of young adult carers, regardless of whether they are in education, employment or neither (NEET). Nearly half (45%) of the respondents in further and higher education who were asked to rate their own physical health and to identify any specific issues reported having mental health problems. This reflects previous findings (Sempik & Becker, 2013, 2014) which indicated that 38% of young adult carers in schools and between 51% and 61% who were in work or NEET reported having such difficulties. Indeed, 39% rated their physical health as either ‘Just OK’ or ‘Poor’, with 20% reporting they had a physical disability. This corresponded with 2011 Census data which showed that children aged 5–18 who provided unpaid care were more likely to report their perceived general health as ‘Not good’ as opposed to children who had no caring responsibilities. Those who spent 50 or more hours per week caring were up to five times more likely to report their health as ‘Not good’. Sempik & Becker stated that having mental or physical difficulties is ‘likely to make caring more difficult and create additional complications for studying at college or university’ (Sempik & Becker, 2013, 2014). Health issues reported by young adult carers at college or university Table 3 – NIACE Assessment consultation (Carers Trust, 2013) Health Issue Number Percentage Reported Mental health problems 45 44.6% Physical disability 29 28.7% Dyslexia 28 27.7% Sensory difficulties 11 10.9% Learning difficulties 6 5.9% Asperger’s or autism 4 4% Total 101 100 Copyright ‘Recommendation: Student health and welfare services need to recognise the physical and mental health needs of young adult carers at college and university and prioritise them for support. They should make explicit the services and support that are available and how they can be accessed.’(Carers Trust, 2013) Furthermore, the GP patient survey accompanying the report also highlighted that carers reported a lack of practice support and financial worries which constituted the main reasons for poor physical and mental health. Cree (2003) argues that mental health has a special significance for young carers as children and young people in a caring role may have acquired very negative ideas about what constitutes mental health and mental illness and may, consequently, be reluctant to admit that they themselves are suffering from anxiety. In a study carried out by young carers in Scotland (2003) involving 61 children and young people, the author identified three categories of young carer according to the significance and severity of problems and worries expressed. The first group involved young carers who had problems and worries which are typically associated with adolescent concerns (e.g. worries about body image, friendships, relationships with parents, schoolwork etc.). The second category of young carer worried a great deal about caring and the person for whom they were caring for in addition to the typical problems and concerns experienced by teenagers. Finally, and of more immediate concern was a third category of young carer who had had (or were experiencing) major disruption and loss in their lives (including family violence, sexual abuse and homelessness), in addition to typical adolescent problems and their worries about caring and the person they were caring for. The evidence provided by this study reveals the additional pressures faced by children and young carers at a time in their lives which is already stressful. Findings also indicated that older young people and girls involved in caring expressed more problems and worries in relation to their well-being, suggesting that they may have particular needs that should be addressed. In addition, both problems and worries increased with the length of time spent being a young carer. ‘Financial pressures remain a key component of mental health and wellbeing for carers’ (Carers org, 2010, 2012, 2013) According to Douglas (2013) or states that ‘Since the end of 2000 in particular, there has been a plethora of policies – international, national, regional and local – which claim to be committed to working towards the vision of promoting positive mental health. These include, for example, The NHS Plan (DoH, 2000), Action on Mental Health (ODPM, 2004a), Choosing Mental Health (Mental Health Foundation, 2005), as well as strategies from the UK. In response to the report from the Social Exclusion Unit entitled Mental Health and Social Exclusion (ODPM, 2004b), a guide intended to ‘promote direct payments within mental health services as a means of facilitating greater social participation’ (ODPM, 2004b, p. 4) was published (DoH, 2006b). Direct payments are payments made to individuals who have been assessed as needing social care services, to enable them to make their own arrangements to meet their needs. According to the Department of Health, the purpose of such payments is: ‘to give recipients control over their own life by providing an alternative to social care services provided by a local council. This will help increase opportunities for independence, social inclusion and enhanced self-esteem’ (DoH, 2006b, p. 1).’ It is important to note key policy milestones for carers before considering the impact of regional consultations by England, Wales, Scottish, Ireland and Northern Ireland governments so as to appreciate the policy pressures of each change for carers. Financial pressures and awareness of the disability is directly linked with the wellbeing of the carer and cared for person (Carers trust, 2010; Carers UK, 2010), this includes welfare reforms in recent years involving Disability Living allowance changes, carers allowance and job-seekers allowance. The Welfare reform bill which was implemented from 2010 to coincide with Personal Independence Payment (PIP) is a tax-free benefit for people aged 16-64, who have care needs or problems with mobility or independence. PIP started to replace Disability Living Allowance (DLA) for people in this age bracket from 8th April 2013, although DLA is still paid to children. These changes have not only had a serious impact on the accessibility to financial aid for cared persons and carers themselves they have not been followed by any assessment on the £2.17 billion pounds reduction in the DLA/PIP Budget in the welfare reform or the introduction of PIP itself (Carers UK, 2013). Key legislative milestones since the publication of the Carers Strategy include the following: • The Carers and Disabled Children Act 2000 came into force in Wales in July 2001. This Act gives local authorities power to supply services directly to carers following assessment, and to make direct payments to carers for services that meet their own assessed care needs. • The National Health Service Reform and Health Care Professions Act 2002 (now contained in the National Health Service Act 2006) placed a duty on each local authority and local health board to formulate and implement a Health and Well-being Strategy for the public in the local authority area. • The Carers (Equal Opportunities) Act 2004 came into force in Wales in April 2005. This Act places a duty on local authorities to inform carers of their right to an assessment, and requires carers’ assessments to consider whether the carer works or is undertaking education, training or any leisure activity, or wishes to do these things. The Act also provides for better co-operation between statutory agencies in the provision of services for carers. • The Work and Families Act 2006 came into force in Wales in April 2007. This Act widens the scope of the existing law on flexible working hours? to enable more people with caring responsibilities to request work flexibility. • A landmark ruling by the European Court of Justice in 2008 in the ‘Coleman’ case established that the UK’s disability discrimination law provides protection on the grounds of someone’s association (including caring responsibilities) with a disabled person. This case helped extend legal protection in the workplace to carers and others associated with protected groups. The Equality Act 2010 extended this protection…..? • The Community Care, Services for Carers and Children’s Services (Direct Payments) (Wales) Regulations 2011 extended direct payments to people who are unable to consent to them. In these circumstances the payments are made to a designated ‘suitable person’ who in many cases will be the carer. This means that the carer has more choice and control over the care arrangements to meet the assessed needs of the person who is being cared for. • Under the Carers Strategies (Wales) Measure 2010, Local Health Boards, working with their partner local authorities, were required to develop and implement Carers Information and Consultation Strategies by October 2012. This was one of the first pieces of legislation passed in Wales after the National Assembly for Wales was awarded powers to make primary legislation. • The Breaks for Carers of Disabled Children (Wales) Regulations 2012 came into force on 28 June 2012. The Regulations require local authorities to ensure that: when making short break provision, they have regard to the needs of different types of carers not just those who would be unable to continue to provide care without a break; provide a range of breaks as appropriate, during the day, night, at weekends and during school holidays; and provide parents with a short breaks services statement detailing the range of available breaks and any criteria by which eligibility for services will be assessed. • The Mental Health (Wales) Measure 2010 recognises the importance of involving carers in the planning, development and delivery of care to all those receiving mental health services. • The Social Services and Well-being (Wales) Bill 2013 contains provisions to transform the way social care and well-being services are delivered to carers and those they care for. The Bill is expected to be enacted in 2014, and implementation will begin in 2016. (Welsh government, 2014) According to UK government consultations (2013, 2014), at present the UK Government has not announced any changes to the Carer’s Allowance or to the Carer Addition of Pension Credit, and carers currently in receipt of means-tested benefits such as Income Support and Jobseekers Allowance with a carer premium will continue to receive an additional amount for caring, once these benefits have been replaced by Universal Credit. In the long term, however, the UK Government is committed to reviewing how carer benefits operate in light of the introduction of Universal Credit. In the short term, some carers are likely to be affected by the replacement of Disability Living Allowance (DLA) by a new Personal Independence Payment (PIP) from April 2013, as DLA acts as a ‘passport’ to the Carer’s Allowance (if the person cared for receives the middle or higher rate care component of DLA). Although the UK Government has confirmed that both rates of PIP will act as a passport to the Carer’s Allowance, modelling suggests that by 2015 there will be a reduction of over 20% in the number of people eligible for PIP compared with those who would have been eligible for DLA. It is not known how many carers will lose their eligibility for the Carer’s Allowance as a result. Other changes, such as the proposal to close the Independent Living Fund in 2015, also have unknown consequences for carers as of yet. The Scottish Government consultation (2014) has indicated that the existence of many health inequalities in conjunction with poverty will adversely impact carers. The largest proportion of households with a carer (28%) are in the 20% most deprived data zones in the Scottish Index of Multiple Deprivation (SIMD) and that many of these carers will have poor health. The same study shows that more than four in ten carers (48%) have been in debt as a result of caring and more than five in ten carers (52%) said that financial worries affected their health. It is therefore important that local strategies, and the implementation of the proposed legislation, focus on tackling the health inequalities and poverty experienced by carers. They state that caring can impact on carers in multiple ways and in doing so, affect their physical and mental health, resilience, finances, employment opportunities and ability to have a life alongside caring. Therefore the impact of caring is the overriding factor in determining a carers’? need for support. The Welsh Government consultation (2012) report by the Welsh Assembly considered a new strategy called The Mental Health Strategy for Wales which was started in October 2012 and was described as a cross cutting strategy which addresses not only the delivery of services to people with mental health problems or a mental illness, but also the promotion of mental health for the whole population. Covering all ages, it recognised the importance of delivering care effectively in order to improve the mental health and wellbeing of the people of Wales ultimately requires a variety of agencies to work together. This extends beyond the scope of health and social services, to include education, housing, leisure services, justice agencies and other services. The strategy emphasises not only the importance of informal carers who support people with mental health problems but also the mental health needs of carers and the fact that many people with mental health problems have caring responsibilities. The strategy serves to underpin other relevant legislation such as the Mental Health (Wales) Measure 2010 and the Carers Strategies (Wales) Measure. However, Wales has proven to lack specific focus and a continuing consultation on carers with the most recent documentation written in 2012 as of the time of writing this study. All efforts to include policy changes from other UK national governments have failed to reach the level of impact within the Welsh assembly government and NHS Wales. There has been a positive change planned despite the lapse in strategy change. Gwenda Thomas, Deputy Minister for Social Services, has announced that carers in Wales will have the same rights as the person they care for when the Social Services and Well-being (Wales) Act comes into force in April 2016. This includes the right to have an assessment of their needs carried out and a duty upon local authorities to meet eligible needs. The Act also includes a wider definition of what being a carer entails, providing for greater involvement and consideration of carers when assessing the service user’s needs. It also places a further duty on Health Boards and local authorities to provide advice and assistance to those who care. The Carers UK produced a manifesto relating to government policy and consultations for the 2010-2015 period reflecting progress and regression in the areas identified in the White Papers and Acts relating to carers. They recognised the need for raising change and awareness in the national agenda to influence the impact of social and cultural influences on the carers’ wellbeing especially within recognition, assessments and support policy and implementation. They recommended taking a social approach to working within education, health and working departments of government which deal directly and indirectly with carers. The Manifesto indicated serious areas of concern where progress has been insufficiently impacting the carers life, rendering it harder instead. Figure 2.5 – Carers UK – Carers UK Manifesto progress report (2014) COPYRIGHT 2.6 Positive and Negative impacts of caring Until recently, the literature on caring has focused predominantly on the burdens or difficulties of caring (Nissel and Bonnerjea 1982, Caro 1986, Kahana and Young 1990, Carlson and Robertson 1993) and the potential satisfactions and rewards from caring have been overlooked. However, there has been increasing criticism of this trend and it has been suggested that a realistic picture will not emerge until the rewarding aspects of caring have been explored in greater detail (Motenko 1989, Summers et al 1989, Walker 1990, Grant and Nolan 1993). Moreover, whilst the evidence supports the view that many carers experience caring as stressful, this does not sufficiently help us understand why so many continue to care. There is a need to look for other explanations as to why it is that despite the stressful nature of caring, carers are reluctant to give it up (Twigg and Atkin 1994). A review of the literature suggests that caring is not a wholly negative experience. Positive aspects of caring have been included in a number of studies but the definition and measurement of the concept has varied (Motenko 1989, Cohen at al 1994, Coleman et al 1994, Nolan et al 1996). In Coleman et al's (1994) study of co-resident carers of older people, qualitative data was analysed for 'positive and negative effects of the internal and external' caregiving environment. While Motenko (1988) explored the 'frustrations and gratifications' spouse carers derived from caring using quantitative well-being measures, others have analysed the 'hassles and uplifts' of caregiving (Cohen et al, 1994).  Table 4 Negative effects of young caring on health determinants (OHOCOS, 2008) Poverty and social exclusion (Dearden & Becker, 2000, 2005); Educational difficulties (Marsden, 1995; Dearden & Becker, 1998, 2004; Crabtree & Warner, 1999; Carers Association of Australia, 1997); Restricted opportunities for social networking (Bilsborrow, 1992; Aldridge & Becker, 1993; Dearden & Becker, 1995, 1998, 2004; Thomas et al, 1993); Limited opportunities for taking part in leisure and other opportunities (Aldridge & Becker, 1993); Limited horizons and aspirations for the future (Becker & Aldridge, 1993; Dearden & Becker, 2000); A sense of stigma by association (especially where parents have mental health problems or misuse alcohol or drugs, or have HIV/AIDS) (Landells & Pritlove, 1994; Alexander, 1995; Imrie & Coombes, 1995; Aldridge & Becker, 2003; Evans, 2005); Alienation from peers from lack of understanding (Aldridge & Becker, 1993, 1994; Dearden & Becker, 1998); Alienation from professionals from fear of intervention/separation from family if circumstances become known (Aldridge & Becker, 1993, 1994); Keeping silent from fear of public hostility or punitive professional responses (Aldridge & Becker, 1993; Crabtree & Warner, 1999; Frank et al, 1999; Aldridge & Becker, 2003); Significant difficulties in making a successful transition from childhood to adulthood (Aldridge & Becker, 1999; Dearden & Becker, 2000; Frank et al, 1999) Stress, anxiety, depression and low self-esteem (Dearden & Becker, 1998, 2000; Banks et al, 2002; Shah & Hatton, 1999; Frank et al, 1999; Armstrong, 2002); Eating problems, difficult in sleeping and self-harm (Frank et al, 1999; Doran et al, 2003); Tiredness (Banks et al, 2002; Dearden & Becker, 2004; Frank, 1995); Adapted from OHOCOS Report (2008) These studies provide increasing evidence that the majority of carers do experience some positive rewards from their role (Motenko 1989, Clifford 1990, Grant & Nolan 1993, Nolan et al 1996). The percentage of carers deriving satisfaction from caring varies from 55 per cent (Cohen et al) to over 90 per cent (Clifford 1990). Furthermore, it has been claimed that carer satisfaction is related to; improved carer well-being (Gilhooley 1986, Motenko 1989), an increased personal commitment to the caring relationship and a 48% reduced likelihood of the cared-for person being institutionalised (Gilhooley 1987, Langan et al 1995, Nolan et al 1996, Wright 2000). In otherwords, the presence of satisfaction may be an important factor in the carers' ability to cope (Motenko, 1989). Table 5 Positive effects of young caring on health determinants Some young carers develop a range of caring and transferable life skills from their young caring; Young caring had resulted in mature and responsible behaviour by young carers; Some young carers may develop empathy and understanding for those they care for; Young caring has also led to closer, loving relationships; Carers reporting resilience, determination and motivation to achieve life goals as a result of their caring experiences; (OHOCOS, 2008) Positive Psychology has offered interesting insights into wellbeing and the benefit of psychological concepts such as resilience, determination, confidence and reciprocity (Seligman, 2004; 2010). These themes which have been reported in previous qualitative studies would benefit greatly from a synthesis of negative and positive impacts of caring under a new integrated framework. An integrated review of carers’ wellbeing, resilience and support was offered by MG Cherry et al (2013) which found the carers required consideration of social and cultural factors and that tailored interventions on the carers terms were essential especially when they are in an area of exclusion or isolation. Also, identifying less resilient carers were paramount in providing additional support where needed (MG Cherry, 2013). Positive Psychology and Carers? ‘With wide ranging goals, the field of positive psychology is concerned with issues at a subjective level, at an individual level, and at a social level. Examples of subjective issues are satisfaction judgements, optimism, happiness and wellbeing, while at the individual level issues covered include interpersonal skills, perseverance, and wisdom’ (Peterson & Seligman, 2003; Seligman & Csikszentmihalyi, 2000, Collard, 2009). Even within Positive Psychology which aims to re-evaluate the negative perspective of mental health (Jahoda,1958; Seligman & Csikszentmihalyi, 2000) by paradigm shift, there is little consensus on the meaning of mental health, wellbeing and happiness and how to ascertain them. By considering the roots of Positive Psychology (Allport, 1960; Jahoda, 1958; Maslow, 1962) the individual exists within the community and then within the society and carers specifically find this pressure in their portrayal and at times their isolation from communities including friends who may not understand their perspective and feelings (Becker, 2010; 2012; 2013).  Figure 3 – Mind map of Positive Psychology (Smith, 2008) COPYRIGHT Many counsellors also do development work with carers and vulnerable adults within Positive Psychology coaching. Examples include NLP, Cognitive Behavioural Therapy (Beck, 1966; 2010), Mindfulness and Self-management which all seek to rebalance power and roles in a solution focused approach to the carer and client (Grant & Green, 2003). Many carers who are isolated often find accessing such support very difficult (Carers organisation, 2012; Becker et al, 2013) and national policies and programmes such as improving access to psychological therapies which aim to provide access to Positive Psychology therapies have had limited success (NHS, 2010). Even CBT counselling which provides effective results for specific mental health issues (Lancet, 2009) has been offered through online access. Coaching and collaboration in aspects such as happiness, resilience and wellbeing are being considered by academics (Grant, 2006) but the danger remains that carers suffering from specific disorders may still be overlooked by the Positive Psychology spotlight. There are specific problems in applying Positive Psychology with the current framework as reported by the Positive Psychology Centre (2007) USA which highlights that institutions remain weak on applying interventions throughout its minority members. These include working environments, schools, families, colleges and universities which constitute specific environments where young adult carers may be especially vulnerable to withdrawal or isolation (Becker, 2002, 2005, 2010, 2012; Carers organisation, 2005, 2012, 2013). Institutions need to be educated on the benefits of a new multidisciplinary and multi-school psychological health approach which Positive Psychology can certainly offer to ‘do for moral and character excellence what the DSM does for mental disorders’(Peterson & Seligman, 2004, 2006) and to study what ‘makes life most worth living’(Peterson & Seligman, 2006). Positive Psychology does offer new perspectives for carers who are undergoing serious challenges and mental health worries by dealing directly with virtue and happiness as central concepts (Fowers, 2008) and study meaning which overlapped with happiness (Baumeister et al, 2012) which is shown with previous studies in understanding suffering through caring for resolution. There still remains a theoretical bias and need for stronger foundation for research and theory in Positive Psychology which could certainly be approached through dealing with the wellbeing, happiness and meaning of carers in the field (Chris et al, 2008). Positive Psychology coaching offers the most realistic application of the theory as being an informed practioner when dealing with clients in the community (Stober & Grant, 2006) and need for evidence based therapy (Palmer, 2008; Grant, 2011) to provide solutions and feedback for carers to ensure their wellbeing and happiness is considered. ‘Enhancing wellbeing & performance in personal life & work domains, underpinned by models of coaching grounded in established adult learning’ (Grant & Palmer, 2002). We must be careful of Positive Psychology in its optimistic portrayal of happiness (Binkley, 2011) and therapy becoming disengaged from social influence and targeted to the individual. Both Rogers and Maslow (1963, 1966) highlighted the demands of social norms and their imposition on the clients which highlights the raising demands on specifically young adult carers in their demands to juggle work, finance, life and caring often with little support which gives rise to isolation and psychological pressures. With must keep carers in genuine collaboration and focus when dealing with a positive approach to their mental, physical and social health relating to their quality of life. Indeed, mental health promotion linked with specific interventions could allow greater inclusion for carers as suggested by Friedli (2000, p.15). Social inclusion vs social exclusion/isolation of carers Figure 4 – Carers Trust publication – Young carers who are they? (2012) COPYRIGHT Young adult carers remain a vulnerable and at risk group of the population who offer an essential service to the cared for person; there remains potential for improvement at all levels of local and national support. Young adult carers want and need to be informed of what is happening to them and what is being considered on their behalf. This should be conveyed in a language that facilitates reciprocal communication and understanding. Fallon et al (2012) in nursing investigation reported that discussions with young people exposed that they were not familiar with the range of voluntary services they could approach for support. More pragmatic examples of inclusiveness included young people's requests to be involved in developing assessment forms, mood rating scales, service evaluation forms and research questionnaires. The discussions also brought to light the need for accessible information for young people, in places that they frequent. The report also stated that a strong message conveyed by young people was the feeling of being “hidden”. This is partly related to the stigma associated with both mental well-being and caring, and how their own perception of these issues as being unacceptable has led to them wanting to hide. Stigma is a big issue, but not one that should be shied away from (Fallon et al, 2012). Developing a culture of young people’s participation that is integral to the organisation is a complex process. The dichotomy of putting the rights of young people to participate alongside their need for protection and the accessing of services can be a daunting prospect for all concerned. However, it is clear that if the views of young people, whether carers or service users remain ‘hidden’ then service development will not improve. To achieve this, young people need the opportunity to participate in service planning and development, research and evaluation and educating the educators through less traditional and more innovative ways of engaging with the professional adult world. The project described was one approach to initiating participative collaborative working which focuses on young people and their mental well-being. In recent years there have been calls for more collaborative projects and research regarding young adult and adult partnerships, especially in terms of isolation and mental health (Checkoway & Gutiérrez, 2006) to foster more active participation in communities, social projects and agenda setting. Typically the youth age range in these emerging projects were 15-26 in line with country specific definition of young adults and have provided positive outcomes including teamwork, communication, presentation skills and increased knowledge of mental health problems. Youth also reported feeling valued and empowered, as well as developing new friendships over the course of the project. Moreover, youth participation was perceived to impact service through the tangible contributions of the youth consultants (Ramey et al, 2015). The most successful youth social inclusion in partnerships and collaborations occurred when there was an existing cultural of youth-adult partnership in place, a systematic training and support process and the ability for youth partners to maintain a balance between their peer group and program led outcomes (Ramey et al, 2015). These findings in community mental health promotion could help to assist the social exclusion and isolation of carers which contribute to their mental health and is discussed in more depth in the next section. Social exclusion and mental health The recent Carers UK’s State of Caring Survey (2014) found that 83% felt lonely or socially isolated because of their caring role. ‘They told Carers UK that they feel lonely or isolated as a result of: Not being able to get out of the house much (55%, rising to 64% for those caring for 50 or more hours a week) Not being comfortable talking to friends about caring (36%) Not having time to participate in social activities (61%) Not being able to afford to participate in social activities (45%).’ (Carers UK, 2014) Relating to carers UK findings (2010, 2013, 2014) the Social Exclusion Unit has identified five main reasons why mental health problems too often lead to and also reinforce social exclusion: stigma and discrimination against people with mental health problems is pervasive throughout society. Despite a number of campaigns, there has been no significant change in attitude [Taylor Nielson Sofres, 2003]. Fewer than four in ten employers say they would recruit someone with a mental health problem [Manning and White, 1995]. Many people fear disclosing their condition, even to family and friends. Further still; professionals across sectors too often have low expectations of what people with mental health problems can achieve. There is limited recognition within the NHS that returning to work and overcoming social isolation is associated with better health outcomes. Employment is not seen as a key objective for people with mental health problems by many health and social care professionals. Caring is often a hidden issue in the workplace and subsequently carers can be poorly supported. In Carers UK 2013 State of Caring Survey, nearly 22% of working carers felt that their employer was not supportive of their caring role, 25% agreed that although their employer was sympathetic, they did not offer support. More than 12% did not have flexible working available to them, nearly 5% had an unsupportive line manager and 7% had not felt able to disclose their caring responsibilities. There is a lack of clear responsibility for promoting vocational and social outcomes for adults with mental health problems. Services do not always work effectively together to meet individual needs and maximise the impact of available resources. People can lack on going support to enable them to work. An estimated £140 million a year is invested by health and social care in vocational and day services for people with mental health problems [Financial Mapping Returns, 2003]. But not all of these promote social inclusion as effectively as they could; and links with Jobcentre Plus can be inadequate. People on benefits often do not believe they will end up financially better off if they try to move into work. Many people lose jobs that they might have kept had they received better support. People face barriers to engaging in the community. They can struggle to access the basic services they need, in particular decent housing and transport. Education, arts, sports and leisure providers often are not aware how their services could benefit people with mental health problems and how they could make their services more accessible for this group. Many people do not want to participate in activities alone, however they feel there is no one they can ask to go with them. People can also face exclusion by law from some community roles such as jury service. (Adapted from Douglas, 2013; ODPM, 2004b, p. 4). For young adult carers facing their own mental health and caring for mental health sufferers they are especially at risk of becoming isolated and not recognised for tailored support. If mental health services and specific service providers find accessing and engaging mental health suffers challenging and problematic, then the carers themselves will be even more distinct from their framework and all efforts must be made to include these informed individuals on how to best deal with these problems. Table 4 – Fallon et al (2012) Round table discussions summary points The key messages identified from the round table discussions included: • the need for all organisations to actively and meaningfully engage with young service users and carers; • initial awareness raising in pertinent places, schools, to start to address stigma; • involvement of young service users and carers in educating the educators; • to ensure young people are appropriately informed of all the places, statutory and voluntary, that they can access help and support. Table 5 - – Carers Organisation Isolation results (Carers org, 2014. P09) > An estimated £1 billion in carers’ benefits go unclaimed per year. > 42% of carers have missed out on financial support as a result of not getting the right information and advice. > Half of carers say they feel society does not recognise or think about them at all. > 17% of carers report being treated negatively because they received benefits and a shocking 14% had been victims of crime like damage to property or verbal abuse. > 75% of carers said it was hard to maintain relationships and social networks because people do not understand the impact that caring has. A lack of recognition of who carers are and how the impact of caring results not just in carers missing out on advice and support but also facing prejudice, discrimination and social exclusion for families with caring responsibilities. Also concerning is the educational involvement and dropout rate highlighted in the research report by Halpenny and Gilligan (2004) on Irish Carers which highlighted that amongst 600 carers aged between 15-19, high school was the highest educational achievement attained. The recommendations suggested that carers facing specific demands in education require specific support and help to remain included socially and financially. Further issues facing young adult carers regarding social and financial isolation were reported in Ireland by Kennan et al (2011) in that there are no targeted services for young carers and their sampling strategy have to be created to gain access to the isolated carers in the study. They also reported that ‘there were no legislation, policy or targeted services directly focusing on young carers in Ireland.’ Moreover, they identified difficulties in accessing gatekeepers for young carers in Ireland, stating that ‘It soon emerged that the majority of agencies contacted, while broadly supportive of the aims and objectives of the research, were unable or unwilling to assist with the research and provide referrals.’ This difficulty in accessing primary agency and support to access carers remains a serious issue to external agents and researchers aiming to provide awareness and seminal studies. Kennan et al (2011) also reported that many of the agencies had no direct contact with the target carers and simply offered an adhoc or referral basis of inquiry and communication. Carers facing real isolation in social, cultural, financial or other means should have the recognition and support on hand to empower and provide a real mechanism for opportunities. Listed below are a few select case examples of organisations providing a change for carers since ‘Carers face real challenges. So many don’t know what support is or where they should look for it’  Figure 5 – Carers Trust publication – Time to be heard (2012) COPYRIGHT  Case example - Open University in Wales: Access to Education for Carers Project Funded by the Waterloo Foundation, this project seeks to engage with carers of all ages in learning opportunities, to raise the aspirations and opportunities for carers to study in Higher Education so that they can enhance their knowledge, skills and confidence. The Open University’s flexible distance learning methods are ideally suited to carers, who often have to study at unconventional times to fit in with their caring roles. The project successfully: developed information specifically aimed at carers worked with carers groups to complement their informal learning programme, and provide enhanced support through taster sessions and face-to-face study clubs ran a bursary programme to help towards the cost of course fees for carers who are eligible for other financial support; and helped to influence the way the Open University responds to and supports its students who are carers. As a result carers have become one of the widening access priority groups for the Open University across the UK, and the University is now working on developing a carers ‘flag’ to highlight students who are carers. (Welsh Government consultation report, 2013) Case example – NIACE Case study (2014) – York College York College has been developing its targeted work with young adult carers incrementally over the last five to six years. However, due to a growing interest and awareness amongst staff regarding the difficulties young adult carers face, this work has become an increasing priority for the College over the last three years. The College currently works with around 100 young adult carers, 83 of whom are under the age of 21. Through its broad definition of caring and its flexible approach, York College has developed an effective and person-centred system that supports young adult carers and enables them to stay engaged and progress in education. One of the course co-ordinators at York College identified three factors which are critical to the success of their work with young adult carers: The College has a support system in place that does not define young adult carers by their caring responsibilities. This means that the young carer is treated as a person rather than a label and gets the individual support they need to make successful transitions The Young Carer’s Card saves young carers from the potential embarrassment of telling their story repeatedly but ensures recognition from tutors that these students might need additional support. The variety and flexibility of their support offer means the College can tailor support to the specific needs and situation of each carer. This encouraging example of college awareness and responsiveness towards young adult carers shows the impact of placing young carers at the centre of any program or support strategy. While it is uncertain the level of impact achieved and how to measure its outcomes it does offer opportunity in dealing with the young carers themselves in considering the personal impact of a campus wide initiative. Table 6 Caring tasks and responsibilities of young carers Caring Duty Study at 1995 Study at 1997 Domestic 65% 72% General 61% 57% Emotional Support 25% 43% Intimate Care 23% 21% Child Care 11% 7% Other 10% 29% Source: Dearden & Becker (1995, 1998) Table 6.2 Nature of illness/disability of people with care needs Physical Health Mental health Sensory Impairment Learning Disability Mother 57% (2056) 50% (1799) 7% (239) 4% (153) Father 65% (625) 43% (414) 7% (72) 8% (81) Sibling 49% (1048) 10% (222) 63% (2029) 3% (61) Grandparent 88% (174) 19% (37) 5% (14) 6% (19) Source: Dearden & Becker, 2004 NB Percentages do not add up to 100 since many people had more than one condition The Young adult carers are not a homogenous group and their caring tasks vary according to the health or disability needs of the people they care for. This variety of needs can take many forms, for example emotional support which is highly important for people with mental health needs is often overlooked. This level of emotional support provided by young carers nearly doubled between 1997 and 2003 (Becker, 2003, 2004) and must be understood by support agencies and practioners when consulting with young adult carers. Caring can be a very long-term commitment for many children, and can start at an early age. ‘Over a third (36%) of young carers had been caring for 2 years or less, 44% for 3-5 years, 18% for 6-10 years and 3% for over 10 years’ (OHOCOS, 2006). A new perspective on involving youth and adult in intergenerational partnership has shown promise and results relating to mental health awareness, support and interventions (Wong et al., 2010). By allowing young adults as active consultants in their own mental health development it has showed positive impacts in cross-cultural impact studies (Ramey et al, 2015; Ramey, 2013). Practitioners places? in these cultures are ideally located to build partnerships across cultures and societies to promote health awareness. Practitioners and professionals working with young adult carers must work within their cultures and environment (Wells, 2000) to become socio-culturally aware which is often overlooked, leading to their withdrawal from specific institutions or society at large (Crossley, 2000). The carers organisation which represents carers nationally often cites examples of a continuing lack of feedback and empowerment of carers and NIACE(2013) suggests that colleges and universities offer little consideration or support for young adult carers with interviews providing evidence of carers becoming isolated and withdrawn stemming from this environment. Professionals must be proactive in dealing directly and targeting carers who have faced issues rather than offering information alone which seldom modifies change or structural change (Grogan & Masterson, 2012). Instead, the carers must be the focus of the support structure similar to the client-centred approach alongside education to raise awareness and recognition of carers throughout work, life and educational structures. Behaviour and societal change is also essential to allow a paradigm shift in the carer and the society to which they need support from (Douglas & Jenny et al, 2008). Further, strong communities and societies which respond to their individuals in terms of social support, empowerment and inclusion are seen as vital to mental health and wellbeing (DoH, 2004a).  Figure 6 – Wheel of Participation (Source: adapted from Davidson,1998) COPYRIGHT Considering the wheel of participation I would also suggest the following structural approach by Douglas et al (2013) on their book on promotion public health (Open University, 2013). Five Structural Approaches to Health Promotion (2008) Medical Behaviour Change Societal Change Education Client Centred Approach The five structural approaches to health promotion provide a useful multi-approach towards considering cultural and social impacts towards health changes. Barton and Grant (2010) also showed determinants of health and well-being in neighbourhoods which link to the behaviour and societal change from the structural approach method. Figure 7 – Barton and Grant (2010) Wheel of participation COPYRIGHT Theories and approaches to health relating to client and service users such as the young adult carers need to be tailored to the socio-cultural influences and temporal changes happening as a result of the culture surrounding the users. The theories considered in this study reflect this approach and seek to provide a more balanced and holistic consideration of the carer’s points of view. Theories of Care Four key perspectives on Young Carers (Becker et al, 1998) • The medical model, which originated in the early 1950s is primarily concerned with the impact of ill-health and disability on families, including children • The young carers’ perspective originated in the late 1980s and early 1990s is concerned specifically with children who are care-givers within families where there is ill-health or physical or mental impairment. This approach is rooted in a children’s and carers’ rights perspective which views children and carers as fulfilling distinct family and social roles, including being the main providers of care in the community • The social model of disability dates back to the late 1970s. This approach is primarily concerned with the rights and needs of disabled people and their experiences of ‘disabling barriers’ including discrimination and exclusion • The family perspective is still evolving and becoming more clearly defined in service and policy responses to young carers. The family perspective has grown out of the debate between the rights of disabled people and the rights of children who care and is consistent with the principle of UK and Irish policies, emphasising prevention in a family context as opposed to protection  Figure 8 – Treasure et al 2007 carers coping model COPYRIGHT Figure 9 - MG Cherry et al (2013) carers’ Psychological model COPYRIGHT These are social and cultural factors, Properties and aspects of the care relationship carers’ psychological resources Proposed Research Objectives To study and define young adult carers’ wellbeing & mental health while facing their daily caring duties and barriers to education, work and living through isolation or exclusion. This study aims to engage and empower the young adult carers’ voice, strengthened with statistical and theoretical underpinning to raise awareness of key themes in mental health/wellbeing and isolation to drive further research and make a contribution to agenda and paradigm change. The aims and objectives of this study are grounded in the theory presented by Treasure et al (2007) in the carers’ coping model and the MG Cherry et al (2013) carers Psychological model, and in reference to prior research specific to young adult carers 18-25 (Deardon and Becker, 2004; Becker and Becker, 2008; Becker et al 2013; Abraham and Aldridge, 2010) Investigate the focus in recent years, which have highlighted the problems faced by young carers and specifically the emerging adult young carers (18-25) (Becker and Becker, 2008) which indicated that their needs were not being supported. Continue the thematic evidence from prior studies which show that caring roles may result in positive and negative outcomes regarding wellbeing, mental health and also their social inclusion/exclusion as a result of their caring (Kornblum & Anderson, 1985; Segal & Simkins, 1993; Pakenham, 2005b; Pakenham et al, 2007. Report the barriers present to young carers mental health/wellbeing and how they may be overcome and theoretical driven research possible for the future (Action for Young Carers, 2005; Barnardos, 2007). Include mixed methodology with action research to highlight health outcomes for young adult carers relating to mental health/wellbeing and isolation. To pursue a collaborative research methodology to involve the carers in all three stages to raise their profile and in turn awareness nationally and their national agenda/policy.  3.0 Methodology This chapter begins with a short introduction of my own perspective and position as a PhD researcher and assist in highlighting the ontological and epistemological reasons for the mixed method approach of this research. I will follow with a discussion of qualitative and quantitative methods and the reasons for each approach and how it contributes to the final rationale. 3.1 As a person and a researcher My personal experience as both a young adult and adult carer has had a profound impact on my approach towards this research. Upon reflection, during that time I would not have considered myself as a carer as per the official definitions provided within the literate review of this study; I was merely fulfilling my duty as a family member, despite the demanning commitment and strain. Carers support was far more limited in my hometown with few support services being accessible or even known particularly in social and educational environments. I considered myself as simply helping out with household tasks and providing essential emotional support for my precious family members. My caring role became more significant when the family became less mobile or their illness worsened leaving them with less autonomy which in turn instilled a sense of determination, motivation and responsibility which is ingrained in me and applied in this study’s approach to research and its methods of use. The ultimate experience of these years of caring were to shape my own decision attend University and approach Health Psychology as a subject linked with counselling to aid those most vulnerable in the community who are ignored, excluded or isolated. Caring has also given me invaluable insight into the difficulties and complexities of those baring a significant responsibility for their loved ones. It has in short, formed my own perception of the world and its members. 3.2 As an informed researcher As a carer, I have continued to explore and experience different methods of counselling and carers support. These methods included natural therapies, mental therapies (NLP, EFT, CBT, Meditation, Mindfulness, Reflexology, Alexander Technique, Reiki, and Hypnotherapy) and psychological research methodologies both qualitative and quantitative. Having decided on a focus on qualitative while conducting a variety of studies at University combined with a focus on health and counselling psychology schools, I conducted my final dissertation on young adult carers in a qualitative approach. This approach has enabled me to reach voices perhaps overlooked in other methodological approaches and I have come to a more balanced approach in viewing each method of research in having their own advances and disadvantages. The framework of my research approach is idealistic?? and ultimately aimed at a balance of approaches rather than a focus on a specific methodology which allows another form of bias. Reflexology and critical evaluation of work by colleagues and peers remain an invaluable source of inspiration and feedback to continue my discovery as an informed researcher.  3.3 As a research practitioner As a critical research practitioner, I aim to create a synthesis of different Psychology schools and approaches to break down the disciplines to form a more unified Psychology approach. This I have found? with the mixed methods approach and utilising new definitions and technology in its application. For example, merging Health, Positive and applied Psychologies to form the basis of this PhD study’s aims and outcomes. Recent research has highlighted need for more evidence based practice in applied psychology and specifically in scientist-practitioner approach of research (Reynolds, 2011). 3.4 The journey towards Mixed Methodology and triangulation (Samkange et al, 2013) COPYRIGHT Mixed Methodology is an innovative method, developed by William Stephenson, as a vehicle for gathering subjective viewpoints (Stenner, 2008) and employs both quantitative and qualitative techniques in the process of studying subjectivity. ‘Traditionally, research methodologies are broadly classified into qualitative and quantitative thereby creating a huge divide amongst researchers, especially in social sciences’ (Onwuegbuzie and Leech, 2005); the significant difference in approach and ontological basis of these two methods has been extensively discussed in journals and publications (Neuman, 1997; Myers, 2007, 2009). Myers states the ‘quantitative methodological tools as including action research, case study, ethnography, grounded research, semiotics, discourse analysis, hermeneutics and narrative while quantitative research methods encompass surveys, simulation, mathematical modelling, laboratory experiments, statistical analysis, econometric and structured equations modelling’ (Myers, 2009, p.8). However, more recent changes in Psychological research and approach have considered a mind-set shift in methodological approach to engage in debates over combination and similarities of overlap between the two approaches. This combination termed mixed-methods or triangulation (Onwuegbuzie and Leech, 2005; Tashakkori and Teddlie, 1998; Newman and Benz, 1998) allows an opportunity to discuss results divergently rather than convergent and allows for greater interpretation and rigorous display (Neuman, 1997). It is important to remember that sufficient depth and analysis must be given especially in design and sampling to ensure the overall design of the study is not weakened by this unique and flexible collaborative approach. As stated with Samkange et al (2013) triangulation highlights the significance of flexibility and open mindedness while objectively managing research biases (Desai & Porter, 2006). Or as Bishop writes (2015) In other words, it is important to maintain the integrity of each component in mixed methods research while being mindful of the epistemological approaches and possible conflicting bias and cultural influences on the philosophical reason for the research. The rationale behind the methodology is discussed below to ensure that the chosen methodology can suitably address the questions and aims of the study. 3.5 Rationale: Initial proposal concerning the research methodology determined that the chosen method would be required to: Appropriately address the research questions and be consistent with the aims of the study, as well as with my own ontological and epistemological position as researcher Bring clarity and structure to complex, multi-faceted discourses and social constructions Reduce the potential power dynamic between participant and researcher Allow the voices of the young adult carers to be paramount and supported through theoretical and mixed method analysis Be exploratory in nature, without assumptions or hypotheses Accommodate numbers of participants from differing sample groups and a potentially international dynamic, allowing for consideration of social and cultural influences on the carers wellbeing, mental health and social inclusion. By investigating the areas of mental health, wellbeing and isolation impacting young adult carers through triangulation methodology allows us to prompt discussion and future considerations for research and interventions. The quantitative questionnaire to target isolated carers and provide significance and ecological validity to the areas to lead into key consultations with Departments of Education, Department of Health and National policy makers. To appropriately address the research aims and to be consistent to reflect on my own bias and influence on the study by reducing the potential power dynamic between participant and researcher; allowing the voices of the young adult carers to be paramount and supported through theoretical and mixed method approach. This project was designed as a multi-stage project because the primary aim was to use qualitative methods to explore young adult carers own beliefs and identify common themes in the aims of wellbeing, mental health and isolation, and the secondary aims were to extend this work by utilising an existing questionnaire on carers wellbeing to assess our common themes and to test the questionnaire quantitatively and allow for greater participation for isolated carers. By focusing on young adult carers from the North-West area and utilising purposeful sampling to be specific in the aims of the study. 3.6 Qualitative Research The qualitative research approach was determined to be the most effective way of approaching the opinions and themes of the young adult carers guided by principles of thematic analysis and semi-structured approach. The qualitative approach was selected for the several reasons. Firstly, qualitative research is focused on naturalistic settings and concerned with people’s own personal opinion and interpretations regarding their experience and motivation. Secondly, it also offers the richest description of individual’s perceptions, opinions, beliefs, feelings and meanings concerning specific life events such as caring (Becker, 2002, 2005, 2010; Bryman, 1988, 2001). Finally, it allows for the researcher’s own influence over the nature of the study and the reflexology to analyse specific bias in the research process. This approach matches the research aims of this study and the principles of thematic analysis. 3.7 Semi-Structured Interviews Burnard (1994: 69) contends that ‘the interviewer has to pay special attention to the phrasing and clarity of his or her questions’ (Irvine, 2013) which has been shown in research in a lack of rich data in telephone or online interviews where a interviewer may miss an opportunity to pursue a cue or manner in the personal interaction which interviews offer. This interaction has been shown to give significant results in naturalistic research and is one of the most popular methodologies in qualitative research (Hermanowicz, 2002). Opdenakker (2006) stated that face to face interviews give the interviewer ‘a lot of extra information that can be added to the verbal answer’. In particular, being able to respond to the carers’ needs and conform in discussing sensitive and personal information is given more flexibility in semi-structured interviews where the interview can be altered or changed depending on the situation (Gillham, 2005; Rubin and Rubin, 2005; Shuy, 2003). Furthermore, ‘Questionnaires and interviews are often used together in mixed method studies investigating educational assessment (Brookhart & Durkin, 2003). ‘While questionnaires can provide evidence of patterns amongst large populations, qualitative interview data often gather more in-depth insights on participant attitudes, thoughts, and actions’ (Kendall, 2008; Harris et al, 2010). Qualitative interviewing differs greatly from quantitative research interviewing in several ways: • The approach tends to be much less structured in qualitative research. In quantitative research, the approach is structured to maximize the reliability and validity of measurement of key concepts. It is also more structured because the researcher has a clearly specified set of research questions that are to be investigated. The structured interview is designed to answer these questions. Instead, in qualitative research, there is an emphasis on greater generality in the formulation of initial research ideas and on interviewees’ own perspectives. • In qualitative interviewing, there is much greater interest in the interviewee’s point of view; in quantitative research, the interview reflects the researcher’s concerns. This contrast is a direct outcome of the previous one. • In qualitative interviewing, ‘rambling’ or going off at tangents is often encouraged; it gives insight into what the interviewee perceives to be relevant and important however in quantitative research, it is usually regarded as a nuisance and discouraged. • In qualitative interviewing, interviewers can depart significantly from any schedule or guide that is being used. They can ask new questions that follow up interviewees’ replies and can vary the order of questions and even the wording of questions. In quantitative research however this is avoided because it will compromise the standardization of the interview process and hence the reliability and validity of measurement. • As a result, qualitative interviewing tends to be flexible, responding to the direction in which interviewees take the interview and perhaps adjusting the emphasis in the research as a result of significant issues that emerge in the course of interviews (see Box 15.3 for an example). In contrast, structured interviews are typically inflexible, because of the need to standardize the way in which each interviewee is dealt with. • In qualitative interviewing, the researcher wants rich, detailed answers as opposed to quantitative research where the interview is supposed to generate answers that can be coded and processed quickly. • In qualitative interviewing, the interviewee may be interviewed on more than one and sometimes even several occasions. An interview technique is used to gather primary data for almost all kinds of qualitative research and they are typically classified into structured, semi-structured and unstructured interviews (Myers, 2009). This technique, mostly the unstructured type allows interviewees enough room to provide detailed responses (Myers, 2009). The interviewees can be individuals or a focus group and the method is commonly used to extract first hand data for LO research (Kira and Frieling, 2007; Kim and Kaplan, 2006). A focus group is particularly useful when researching collective learning as it allows participants to interact in a stimulating atmosphere while a researcher elicit opinions, mental models and attitudes held by the interviewees (Pahl-Wostle and Hare, 2004; Brodbeck, 2002). Despite the advantages, interviewing has a number of problems including: lack of time to conduct interviews may often lead to incomplete data gathering; lack of trust in the interviewer may discourage interviewees from divulging sensitive information; elite bias where the researcher tend to focus on high profile informants and difficulty in getting access to a wide and varied range of interviewees in an organisation (Myers and Newman, 2007). 3.8 Focus groups Given the sensitive nature and difficulty of gaining access to isolated carers who may feel vulnerable in a one to one interview; the focus group was selected as an alternative discussion methodology for the qualitative approach. The focus groups in the dissertation stage were successful in providing a supportive and dynamic environment for the young adult carers to isolate themes arising from the interviews and focus on changes they wanted to see as a result of the themes. Focus groups by their nature encourage discussion and collaboration to provide support for those who feel individual interviews may be too intrusive. By allowing the carers themselves to be guided by the carers centre contact and the researcher, it encouraged their voices and autonomy in conducting the discussion on the areas of wellbeing, mental health and isolation. The main objective of the focus group was to build upon the themes of the main topic areas and to encourage stimulating discussion via interaction with others viewpoints (Morgan 1991, Henderson 1995). The focus group were arranged with the help of community workers and volunteer groups in the North-West of England. Contact was made via the organisers of support groups run by both statutory and voluntary agencies who were asked to invite their members to the focus group. Each group consisted of eight to twelve members of young adult carers which took place at their carers centre at a time convenient to the carers and staff.  3.9 Thematic analysis Thematic analysis is specifically related to the human experience. This qualitative approach highlights the carers’ experiences, feelings, opinions as a result of their individual perspective. This allows a greater flexibility for the participants to discuss their opinion on their own terms when linked with semi-structured interviews in a more inductive manner. It allows the flexibility for the multi-theoretical approach in the methodology and the ability to focus on themes highlighted in line with the research aims. The resulting categories from the coding and analysis further allow for particular discussion and concluding comments which is particularly useful in further investigation in stages 2 + 3 involving the focus group and questionnaire. 3.10 Quantitative Research Quantitative methods are traditionally favoured in the sciences and especially within Psychology (Bishop, 2015; Alise & Teddlie, 2010). The use of statistics to validate, signify and replicate studies are often easier to what? in terms of framework and methodological approach but emerging evidence from combined quantitative and qualitative suggests they may compliment and add another perspective to the data collection and use within debates and discussions. When considering methodologies qualitative and quantitative appear to be polar opposites with exclusive results. However, by combining quantitative and qualitative research methods within the same study, researchers have proved that they are not necessarily incompatible (Qureshi 1995 cited in Gilbert 2001, Critcher et al 1990) and are particularly effective in policy-orientated research (Gilbert 2001). Furthermore, quantitative and qualitative research may be relevant at different stages in the research process (Bryman 1988). Gross et aI's (1971 cited in Bryman 1988) and help to support overlapping weaknesses and strengths through triangulation. Quantitative methods are still favoured as being more scientific and subject to specific testing and validity testing in the field of Psychology. 3.11 Self-completion Questionnaire Questionnaires and interviews are often used together in mixed method studies investigating educational assessment (e.g., Brookhart & Durkin, 2003; Lai & Waltman, 2008; Harris et al, 2010). Harris et al/ or Additionally it has been also reported that questionnaires also provide evidence of patterns and indications in large populations where qualitative data often gathers more specific and individual data on a lower population (Kendall, 2008). Their article also highlighted the complimentary way that interviews and questionnaires work together in a mixed methodology and how the self-report questionnaire provides for people holding conflicting perceptions and beliefs (Marton & Pong, 2005; Pajares, 1992) to respond in seemingly contradictory or inconsistent ways. In doing so it produces one of the most robust and valid methods of testing direct responses from participants about their opinions and thus should not be discarded. The questionnaire chosen for this study was developed and rigorously tested by the Royal College of Psychiatrists for the National Institute for Health Research Service Delivery and Organisation programme relating to Carer Well-Being and Support. After contacting the research team, I received a favourable response and the questionnaire items linked well with the aims of carer wellbeing, mental health and isolation. The questionnaire involved collaboration of partner organisations which supported the interdepartmental, intergroup and client centre approach to health promotion highlighted as essential in the literature review. The partners themselves deal directly with the carer clients and have relevant experience in developing this questionnaire. The partners include: Royal College of Psychiatrists’ Research and Training Unit Rethink – Mental health charity Alzheimer’s Society London School of Hygiene & Tropical Medicine, Health Services Research Unit The three phases of revisions of the questionnaire resulting in its final version (CWS-10) was completed in collaboration with carer workshops ensuring feedback and involvement was received at all levels of the process and in keeping with the methodology and ontological design of this study involving the carers at every level of the research. ‘The three workshops were an important beginning of the attempt to redevelop the CUES-C questionnaire to make it acceptable to the broad range of carers for people with dementia or a mental health problem. The workshops generated much useful feedback from a diverse group of carers. Participants indicated improvements such as adding new items/questions, dividing up existing items into two or more separate items, or modifying normative statements at the beginning of each item’ (Quirk et al, 2009). Pilot testing of the questionnaire on local carer groups following the testing in the original development was met with highly favourable results and feedback. The qualitative component of the questionnaire allowed the flexibility in the pilot study and was well reported at this stage and in the original development stage. ‘The qualitative feedback from respondents in the preliminary trial was used in three main ways: 1. (Royal College of Psychiatrists) We have offered it as evidence for the acceptability of the instrument and its comprehensive coverage of issues that are considered important by carers 2. When considering the results of the item reduction analyses, we drew on the feedback to inform decisions about which item in a pair of redundant items to eliminate. 3. We revised the instructions page and Background Information section to address the difficulties experienced by respondents. Drawing on the qualitative feedback, we revised the instructions (i.e. the front page) and Background Information section. The aim was to enhance the acceptability of the questionnaire to carers by addressing the difficulties experienced or alluded to by respondents.’ (Quirk et al, 2009) Regarding alteration of the CWS-2 questionnaire, the following areas were identified. 3.12 Questionnaire requirements outline Involvement of carers in qualitative stages 1 + 2 in 20 semi-structured interviews and 4 focus groups to discuss the CWS Questionnaire. Utilising psychometric evaluation and feedback from the carers in a true collaboration it is hoped to include them in participatory research at every possible stage of the questionnaire development in phase 3 (PHD stage) before, during and after statistical testing involving SPSS.The aims of the research is to investigate young adult carers’ mental health, wellbeing and isolation impact as a result of their caring experience and relate this to development of discussion and research implications in framework and questionnaire development To develop the CWS-2 49 item questionnaire instrument to measure all important aspects of the experience of young adult carers of people with various health and mental conditions. To evaluate the psychometric properties of the development in staged field testing. The development is to work closely with carers themselves, to ensure that the acceptability and robustness, relevance of the questionnaire is acceptable.. 3. To utilise triangulation to include a range of qualitative and quantitative approaches to ensure that isolated carers have an opportunity to engage with the interviews, focus group or questionnaire (online and email,) to allow for data to be collected in a variety of ways to ensure richness and descriptive data is not lost and combined to form meaningful conclusions. Working with interagency gatekeepers to allow access and support to the young adult carers in the study and to place their voice and wellbeing at top priority of the ethical consideration of the research Working with two international campus partners to consider community, social and country specific influence on the mental health, wellbeing and isolation of the carers and pursue a network of collaboration and research sharing to raise awareness of the carers in each country and foster new alliances. Building on the dissertation qualitative study of young adult carers in the North-west, focus the sample size through purposeful sampling to ensure data is specific and representative of that small demographic and enhance its impact through local facilitation. The qualitative interview questions and the questionnaire itself are developed specifically for young adult carers as an under-represented group even within the scope of the carers’ definition which is constantly changing. The measures to be included are to be used both for carers and by the cared for persons themselves in a future rateability scale for adaptability. By asking the carers themselves to identify constructs which are important to measure, the following suggestions were put forward: Psychological and Physiological well-being Mental health awareness and support Isolation and support of young adult carers specifically The outcomes relating to these constructs are divided into three categories below; each with 15 questions per category as follows: Category (A) Outcomes related to the carer herself or himself, for example the carer’s health or quality of life (i.e. ‘wellbeing’). This can include biological, psychology, physiological wellbeing in line with definitions of health. Category (B) Outcomes related to the carer’s experience of mental health, such as the effect of care-giving on mental health and the impact of caring for people with mental health issues. Category (C) Outcomes related to the support and isolation experienced which include the social and community impact on carers in line with the theoretical framework. In considering the literature review of questionnaire development for health outcomes and assessments (e.g. QALY, HRQoL, SF-36) it is unsuitable to assess all constructs in one evaluation therefore a continuing process of development and testing will be needed for a robust, reliable and significant questionnaire.  The primary objects of the development include: Maintaining the breadth and acceptability of the measure Acceptability (e.g. identifies items with a high number of missing responses or with large floor/ceiling effects, items which are highly correlated and thus redundant) Ensuring that the measure addresses issues relevant to the young adult carers Internal consistency (Cronbach’s alpha of > 0.70 and acceptable item/total correlations) and test-retest reliability (ICC > .80) Evaluating the psychometric properties of the measure to confirm its scientific rigor (reliability and validity) Subscale structure (using factor analysis and item convergent and discriminant validity) The inclusion of qualitative interviews and focus groups in the development of the questionnaire as well as gaining essential insight into the carers understanding and experience of the topic areas will allow flexibility within this progressive exercise, such as: Adding or removing items/questions Dividing single items into two or more items Changing the wording of the domain title or the normative statement or the question Changing the number or wording of the response categories All interviews and focus groups were fully transcribed and analysed using thematic analysis for emergent themes in the data. It is hoped this will prove to be a rich source of data and interpretation about the key topic areas to be investigated. By working with local charity and societies to pilot the scheme, we are in a position to utilise this method with phase 1 + 2 + 3 to provide a holistic and triangulated approach to be discussed in the next section. Table 7 Summary of research Methodology Research Philosophy Inductive / Phenomenological Research Approach Qualitative focus but also employing quantitative methods to allow triangulation Research Epistemology Interpretivism Research Ontology Constructionism Research Design Mixed Methods - Triangulation Research Methods Stage 1: In-depth semi-structured interviews Stage 2: Focus group & consultation group interviews Stage 3:Self-completed questionnaire survey Research Analysis Stage 1+2: Thematic analysis & coding Stage 3: SPSS to assess acceptability ƒ reliability (internal consistency) ƒ validity (factor analysis, item convergent/discriminant validity) 3.13 Mixed method approach This study has a mixed methods focus with the first stage of primary research being qualitative which lies at the heart of this thesis; and being integrated with quantitative research tools to allow greater balance for interpretation. Case-studies typically adopt such an approach (Jarratt, 2013) . The mixed methods employed in this study can be described as ‘An approach to investigate the social world that ideally involves more than one methodological tradition and thus more than one way of knowing, along with more than one kind of technique for gathering, analysing and representing human phenomena, all for the purpose of better understanding.’ (Greene 2006: 94) In order to meet the research objectives, both qualitative and quantitative methods have been employed; the first and second stages being qualitative (semi-structured interviews, focus groups) and the third stage of research (self-completed questionnaire) being quantitative. The mixed methods approach employed in this study is sequential and progressive in nature. The quantitative self-completed questionnaires probed specific concepts that arose from the literature review; if they proved significant they would then be explored in-depth in the subsequent qualitative stage. The qualitative data was deliberately analysed before the quantitative, as one might expect in a sequential exploratory mixed-methods approach (Creswell 1998). There are precedents for investigating specific issues such as these, using quantitative methods, alongside qualitative method (Milkman 1997, cited in Bryman and Bell 2003: 4).  3.14 The research Designs An inductive approach to the research design interprets the behaviour and construction of the young adult carers’ experience relating to their mental health, wellbeing and isolation. This research does not propose a hypothesis but, instead, employs a multi-method approach in an attempt to offer a holistic assessment of the young adult carers’ opinions. Thus, the literature review is followed by these three stages: 1. In-depth Interviews 2. Focus Group consultation 3. Questionnaire Survey These stages are further detailed in the following ‘Research Methods’ pages and the research design is outlined in Table 7 Table 8 The research design Part Phase Method Technique Analysis 1 1 Literature Review – research forming the primary study design and objectives 2 1 & 2 Semi-structured interviews (n=18): The carers opinions on wellbeing, mental health and isolation Four Focus group interviews with eight to fifteen carers. Informal group discussion on wellbeing, mental health and isolation Semi-structured interviews Recorded and transcribed Purposeful sampling Thematic analysis and coding was used primarily for discussion Manual analysis 3 3 61 Item Carers questionnaire CWS (n=181): 49 item 5-Point Likert questionnaire investigating the carers opinions on wellbeing, mental health, involvement. 12 qualitative questions. Self-completed paper questionnaire Sampling in North-west area SPSS Software for analysis: Spearman's rank correlation coefficient was employed Design of the interview: Semi-structured interview of local adult carers of the age 16-25. The interviews were of a qualitative nature to record information for meta-analysis and transcription. The interviews were conducted over 45-90 minutes with a focus on the carer’s opinion on their duties as a young adult carer and their experience of mental health, wellbeing and isolation. Rationale for semi-structured interview as a triangulation methodology, as shown in figure 1. Below, the semi-structured interview method allows for more flexibility and opportunity for individual experiences to be investigated and considered. Qualitative interview methods remain one of the best methodological approaches for sufficient robust meanings (Berg, 2001).  Figure 1. Triangulation diagram of Qualitative and Quantitative methods. COPYRIGHT The interviewees were recruited from the local population but are not representative of that demographic given the sample size and method of approach. The interviews were semi-structured (Berg, 2001) 'to allow for more flexibility in understanding the participants experience’ of the carer interviewee's. The interviewer attempted to interview candidates from a range of ethnic backgrounds to allow for greater understanding of key themes across cultural influences and will aim to give considerable flexibility in follow up questions in order to give indepth value to their answers. The primary focus is to highlight themes and contextual understanding from the interview which is then analysed through thematic analysis. Participants: Participants were approached on campus using purposeful sampling in the North-West of England including Blackpool, Preston, and Manchester and in collaboration with the local carers’ organisation group. Phase one interviewees consisted of 18 individuals, age between 16-25 years. For this study the interviewees had to be over 16 years of age to provide a young adult opinion on caring and their difficulties faced. Additionally, interviewees were a mix of sex and ethnic backgrounds? which presented further rich data for the discussion. The range of caring roles varied between the participants and gave a valuable insight into the differences and similarities each carer faces. Table 9 Participants Table Name Age Sex Relation Cared Illness/disability No of years caring Age of cared person Sex Stages Linsey 22 F Grand-daugher Lung Cancer 10 65 F I,II Sheryl 19 F Daughter Mental Illness 6 45 F I,II Susan 23 F Grand-Daughter Dementia 3 ? F I Thomas 19 M Son Cardiac 6 ? M I,II Betty 25 F Daughter Mental Health/Learning 5 50 F I,II Paris 19 F Daughter Alcoholism 6 46 M I,II Britney 22 F Grand-daughter Cancer 8 58 F I,II Shirley 20 F Daughter Mental Health 7 47 F I,II Cheryl 25 F Grand-Daughter Alzheimer’s 5 ? F I Simon 21 M Son Cardiac 7 ? M I,II Daphne 24 F Daughter Mental Learning 6 52 F I,II Sherry 20 F Daughter Alcoholism 7 49 M I,II Paul 17 M Brother Heart-condition 2 25 M I,II Sharon 19 F Daughter Mental Health 10 40 F I,II Cerys 23 F Grand-Daughter Diabetes 11 ? F I Matthew 23 M Son Cancer 1 ? M I,II Linette 24 F Daughter Mental Learning 6 ? F I,II Susan 20 F Daughter Mobility 7 49 M I,II The table below outlines the length of time carers had been providing care. It illustrates that for the majority, unsupported caring was not a short-term commitment. Table 10. Primary carers: length of time providing care Length of time caring (Years) Number of carers Less than 1 year 1 1 - 4 years 3 5 - 9 years 11 10 or more years 3 Materials: A poster and research proposal (See appendix 1 & 9) outlining the area of study and key points was produced and submitted for research review. An invitation letter was produced outlining the nature of the study and what it involved as an introduction to build rapport and also share full facts about the study (See appendix 5). Additionally, an ethics form and information cover sheet (See appendix 2 & 6) for the interview were produced to follow ethical guidelines and explain that the interviewee can withdraw at any point. The consent form (See appendix 7) was produced to outline the informed consent and to emphasise the rights of the participant and ability to decline questions and withdraw. An interview schedule guide listing the 25 primary questions and 38 sub-questions to follow for the interview was also produced. (See appendix 4). Finally, a debriefing letter was produced to thank the participant for their time and allow their consent for feedback on the interview and study. (See appendix 8). There was an initial pilot interview, which tested the initial set of questions and changes made to the interview guide (See appendix 10). The interview guide was constructed using previous questions in prior studies as a guide to the young adult carers for their opinion and feedback; following a number of revisions and discussions with the dissertation supervisor, a final guide was produced. Sampling strategies Purposive sampling was used to identify a suitable sample of young adult carers. This type of sampling guides the selection of participants, events and situations that are considered relevant to the research topic. The aim is to purposely choose subjects who, in the opinion of the researcher are the most likely to provide valid and useful information (Sarantakos, 1998). Participants were selected because of their status as carers aged 16-25. To provide a specific focus the participants were selected in the North-West region of England. For stage 3, the questionnaires selectively recruited participants from previous stages 1+2 and also offered the self-completion through online participation. Procedure: For this study there were three stages, the first two stages involved selecting a location that the participants were comfortable with to place them at ease. Upon initial contact the full nature of the study was explained and questions discussed to give the carers more involvement in the process. A briefing sheet (appendix 3) was emailed or distributed to read, which explained their rights and ability to withdraw from the study at any time and how information would be kept as secure as possible. Before the interview and focus groups participants were then asked to fill in an information sheet (appendix 6), after which a consent form (appendix 7) was presented to give consent for the study to begin. With the focus being a semi-structured interview guide containing open-ended questions was produced (appendix 4) and further questions which could be asked depending on the fluid nature of the interview. The interview began with an ice-breaker exercise to obtain a friendly atmosphere and recorded using a dictaphone, which lasted 45-90 minutes after which the audio data would be transcribed and later analysed using thematic analysis. After the interview was completed, the participant was again thanked for their participation and presented with a de-briefing letter (appendix 8) which explained their rights; namely that the information gained would be stored in accordance with data protection; their identity protected and email contact. The carers were emailed a copy of the dissertation to review before submission to the University. 18 Young Adult Carers were invited to be interviewed through semi-structured process on their experiences of the impact of caring on their mental health/wellbeing and isolation. Following this, a further 8-15 young adult carers caring directly or indirectly were invited to participate in four separate focus group interviews. Finally, 181 young adult carers were contacted for their responses on the 61 item questionnaire recorded and analysed through ANOVA and Chronobach reliability testing and significance through SPSS. The sample will be designed to achieve the maximum possible range of views and experiences of the young adult carers. It is therefore intended to recruit through a purposive sample for this study. The specific steps in negotiation of access to the sample in each stage of the research are outlined below: Stage 1 (Interviews with young adult carers) The carer’s organisations and educational institutes in the North West are forwarded letters of invitation, to contact Young Adult Carers who they work with to participate in the study. These letters also include information sheets, reply slips and contact details, as well as consent forms for information purposes only for the nominated participant. The representatives from organisations that work directly with Young Adult Carers will also be sent these information packs. 2. At the same time, a public recruitment campaign may be undertaken in order to enhance the number of participants. This with entail placement of advertisements through health and social points and campus’s in the North West. 3. On receipt of reply slips, the researcher contacts the individuals to discuss their potential involvement, establish any concerns and arrange to send them details of how to complete the questionnaire and details of the interview itself. 4. It is recognised that difficulties and limitations existed by including the Young Adult Carers themselves in this research given their timetable and timescale. Stage 2 (Focus groups) Following from the qualitative element of the study, a sample of young adult carers many of which were approached as part of Stage 1, were contacted in order to assist in the completion of a series of qualitative semi-structured focus group interviews. The individuals who completed the questionnaire were made aware that they were to be contacted at a future date and asked to more in-depth investigation of the topic. This was clearly stated on all information sheets, the consent form, as well as the actual questionnaire. 2. There were four focus group interviews with a group of young adult carers. It was envisaged that each focus group would involve 8-15 individuals and participants will come from a range of caring settings. The purpose of this phase of the research is to allow the researcher to examine individual’s different perspectives through a group discussion. Each was semi-structured in nature, with the assistance of an interview guide if needed (Appendix 2 for possible ideas of topics for discussion). Final topics for inclusion in the focus group interview guide will be composed following initial analysis of the interviews. The young adult carers specifically will be asked to participate as outlined above in the stages through negotiation of access. It was proposed that the focus group interviews with individuals would on average last 1 hour. 8-15 individuals participated in each interview, with the carers centre staff acting as a facilitator to encourage group discussion and the researcher an observer or additional facilitator as needed. The focus group interviews were recorded and all participants were made aware of this before in the information leaflet and consent forms. Stage 3 (Questionnaire Quantitative) Parallel to stage 1 and 2, an extensive review of information on policies, challenges, promising practices and figures on Young Adult Carers in post-secondary education in the North West will be carried out. 100 Young adult carers received the 49 item Likert questionnaire based on the CWS Design (2008). This questionnaire was designed to focus on wellbeing & mental health and the carers’ opinions on social inclusion following the topics of stage 1 + 2. The following inclusion criteria will be put in place for all study participants in stages 1 and 2 and 3 of this study: individuals aged between 16-25 with caring responsibilities (towards dependent parents, siblings, or other relatives) understands the purpose and process of the research project willingly volunteers to participate in the research project It is hoped that up to 200 quantitative questionnaires will be completed as part of the final stage of this study?. Previous international research on Young Adult Carers, as well as advice from project partners will be considered in the preparation of the questions. In this questionnaire, a defined list of questions will be presented to each participant in an identical way. Participants will be asked to respond to these questions. However, there will also be a semi-structured element to these questionnaires in that they will not *remove not? only be presented with a limited number of alternative answers, and this will provide participants with the opportunity to insert their own comments, where appropriate. The carers will be asked to complete the questionnaires during a time convenient to them. They will be provided with the information on how to complete the questionnaire through an online resource such as Survey Monkey, so as to ensure that they can complete it at a time and place that is most convenient to them. Survey Monkey is a software tool available on the Internet which can facilitate in doing online surveys. Should participants prefer, the questionnaire can also be sent as an email with the expectation that the recipients answer the questions and send the questionnaire back via email. The carers organisation believes that the completion of questionnaires on line or via email will have several advantages over the completion of postal questionnaires, such as the time saved, low cost, ease of use, lack of spatial restrictions and higher response rate. Demographic information on the participants will also be gathered at the start of each questionnaire. It is proposed that the questionnaires will take 15-20 minutes to complete. Ethical Considerations It is considered that rich descriptive research and ethical research go hand in hand; therefore, adhering to standards of ethical good practice at all times during the course of research project is critical. Before research commenced, approval was sought from the Ethical advisory board, the carers organisation and carers themselves.. Full regular contact with the other project partners throughout this phase of the project was maintained in order to exchange information and update them on progress. The researcher will also follow the Ethical Guidelines set out by the British Psychology Society (UK) throughout the design, execution and reporting of results. The principles of informed consent and participant wellbeing will be given priority over the research objectives at all times. Information on the contact details of relevant support Services available to Young Adult Carers will be provided in each of the questionnaires. In relation to the qualitative aspect of this project, it is understood that the interview questions may be sensitive or avoided if preferred and interviews be stopped and even suspended if individuals become distressed in anyway. Ethical consideration relating to the carers data all information gathered will be kept anonymous and confidential participants’ right to privacy will be upheld at all times each participant will be allocated a code known only to the researcher All data stored on the computer will be password protected and all research materials will be secured in a locked filing cabinet. All stages of the research is based on informed consent and collected in a confidential manner and avoiding all areas of un-necessary risks. Gaining access Gaining access remains one of the most difficult issues of research especially when dealing with young or young adult people (Alderson, 2004; Kennan et al, 2011). The process of gaining access to the young adult carers themselves was a highly complex journey involving ethical process and communications at all levels to ensure the carers were involved as much as possible. In conjunction with the partnerships and collaborations with social charities, national government and educational institutions allows the carers and the research team to collaborate and discuss the results emerging from the stages of this study. A growing body of research about young carers and their families documents their service needs, the types of support available and service providers’ perspectives on best practice (Aldridge 2006; Kroehn and Wheldrake 2006; Becker and Becker 2008a; Cass et al. 2009; Purcal et al, 2013) The initial contact of the carers organisation took place in one pilot area to test the response and feedback on the process which received favourable results with the carers staff and young adult carers themselves which involved building a rapport with good practice and placing the carers’ voice first and foremost as defined in the outcomes of the study. After gaining the trust and support of one area, other carers’ centres were contacted and assistance given from the carers’ centre in approaching other centres in the North-West in line with the purposeful sampling. After attending a number of local community events and exhibitions in the North-West on subjects of wellbeing, caring, mental health and isolation, partner organisations were identified and the lead researcher signed up as a community champion of the following organisations to allow multi-agency collaboration and potential for representing the carers and raising awareness at national consultations in 2015. This consultation involves the Northumbria Carers research group which is one of five university campus’s identified in collaboration with this research. Charities involved in gaining access to the carers group Carers organisation across the North-West Rethink mental health Bernanos Lancashire Social Support Universities identified in the collaboration Liverpool University Lancashire University Loughborough University – Carers research group Manchester Metropolitan University University of Central Lancashire Preston college Open University An important bias influence emerged. From the literature review. It is argued that reliance on service providers as gatekeepers may further exacerbate power inequalities between service providers and isolated or marginalized clients (Freimuth & Mettger 1990; Curtis et al. 2004). Primarily direct contact with young adult carers was preferred to avoid the potential censorship or select specific clients for the research. Even so, the majority of carer participants came from the wide array of identified campuses, local areas and partnerships. Kennan et al (2011) reported that ‘Not all research is legitimate or methodologically and ethically sound. As noted by Masson (2004, p. 46), ‘researchers should expect gatekeepers to test their motives for wanting access, and to act as a barrier for poorly thought out or potentially damaging research’. In this study, the researchers had to take the time and effort to engage personally with a broad range of service providers, including front-line staff in order to explain the merits of the study and build a relationship of trust.  International perspectives This research has identified a range of partnerships with international campuses around the globe. This partnership was identified early as adding international perspectives to the young adult carers’ research and strengthening the social and cultural influence to their wellbeing, mental health and isolation as indicated in the theoretical framework and literature review. Purcal et al (2013) state in their empirical background on young adult carers’ international perspectives that ‘Over the last 15 years, researchers have created a fairly comprehensive picture of the circumstances and characteristics of young carers in English-speaking countries, particularly in the UK, Australia and to a lesser extent the USA, Canada, New Zealand and Ireland (Baago 2005; Hunt et al. 2005; Gaffney 2007; O’Connell et al. 2008; Cass et al. 2009; Hill et al. 2009). In other developed countries, especially in continental Europe, research on young carers has emerged more slowly (Becker 1995, 2007). In sub-Saharan Africa, where care by young people is significant and widespread due to the HIV/AIDS epidemic, empirical research and limited formal support services are beginning to appear (Robson et al. 2006; Becker 2007; Evans 2010)’. Also highlighted were differences in the age range and definition of young carers across the international community which matches the recent changes in the UK to reflect the distinction between young, young adult and adult carer (Hunt et al. 2005; Becker 2007; Central Statistics Office 2007; Cass et al. 2009). By identifying two partner universities to be involved in the stages 1 + 2 (Interview and focus group stage) as a short term consultation and involvement it is hoped it will strength collaboration and consideration of other approaches to supporting young adult carers and add a international perspective when raising awareness and support for carers at the consultations to be using this research. The partner international universities identified are: National University of Ireland, Galway Greece, Athens Institute of Counselling & Psychological Studies Both countries and academic institutions were identified in contributions and approaches to carers’ perspectives and methodologies which are similar in nature to this study. After contacting the lead researchers from previous studies a rapport and professional partnership was formed and then aided by the international placement office and supervision team. Of particular interest in this global perspective were also barriers to achieving educational qualifications or regular employment and establishing a career (Dearden and Becker 2000b; Yeandle and Buckner 2007; Becker and Becker 2008a; Hill et al. 2009; Purcal et al, 2013). Also highlighted was the question of achieving intended outcomes, and if so, how and under which circumstances. ‘International research has produced some evaluations of support programmes for carers in general – although results are not conclusive (Eagar et al. 2007) – and in Australia some government programmes for carers have been reviewed (Carers Australia 2008b; Hodge et al. 2008). However, beyond the UK research mentioned above, few systematic evaluations of specific young carer programmes are in the public domain. In the absence of a comprehensive and international evidence base, a classification of services can form a first step in assessing effectiveness, as it can help to clarify service objectives and identify gaps in service provision’ (Purcal et al, 2013) – check if this is a direct quote University of Dublin report on young carers (2011) key findings reported that there were no national legislation that specifically protects the rights and welfare of young carers in Ireland. The children’s rights perspective supports both the recognition of children’s rights and the enforcement of legally guaranteed human rights. Under international law, Ireland is bound by the provisions of the UN Convention on the Rights of the Child (CRC). A number of fundamental rights protected under the CRC are relevant to young carers; in particular the rights to leisure, to education and to freedom from exploitative or dangerous work as well as the principle of the best interests of the child. There is currently no national policy strategy focusing on young carers in Ireland. The decision in March 2009 not to develop the National Carers' Strategy is seen by non-statutory carers’ organisations as a setback for the recognition and rights of young carers. Definitions of ‘young carers’ need to take into account the continuum of caring and the fact that some are primary carers and others are secondary carers. Young people become carers for a variety of reasons. While an illness or disability in the family may act as the ‘trigger’, poverty, poor service provision, the unavailability of other individuals to care and other negative circumstances related to poverty are also important. Care experiences vary markedly among children and young people, depending on family circumstances, the condition of the person cared for and the young person’s place within a care network. In the literature, it is thought that few children or young people undertake primary care responsibilities. According to a number of studies, the prevalence of young carers is not well-established due to possible under-recording and the hidden nature of young carers. Recent census statistics in Ireland (2006) provide some indication of the possible levels of young people caring, suggesting that there are 3,166 young carers in the 15-17 age category. The hidden or covert nature of care has important implications for researching how best to support young carers. The impact of care is largely discussed in studies using negative terms with regard to educational, emotional, social, physical and long-term impacts. However, young carers may also be resilient and caring may result in stronger interpersonal relationships between the carer and the person cared for. While it is likely that only a small number of young carers are involved in providing age inappropriate care, these children and young people may be highly uncomfortable with providing such care which may also have a detrimental developmental impact on them. Children and young people are more likely to be giving care in economically disadvantaged families. The negative impacts of care are more likely to be intensified by socio-economic disadvantage. In 2012, Chadwick and colleagues investigated the impact of social and political changes for Family Carers of People with Intellectual Disabilities in Ireland which reflected the need for more specific research on families, intellectual disability recognition and carers within Ireland. There was recognition from the 10 focus groups containing the 70 parents and siblings that there was still a lack of provision, awareness and family centred services specifically targeted at carers and families themselves. Common throughout the research and literature review was the view that the carers still did not feel valued or recognised for their contribution and experience. This study involved the participants as co-researchers which are in line with this study’s approach to action research which emphasises full involvement and collaboration with the target group as much as possible. They also involved the carers themselves in presenting the findings to local groups which has also proved very effective in promoting carer-advocacy to families. The Life after care report on carers (2012) included the following international partners. › Italy: Sofia (project co-ordinator), is a social cooperative working in residential care services and community programs to support elderly and their professional and family carers › Italy: Arco is a group of professionals skilled in psychosocial intervention, which, since 1996, has been working as a consultation, training and community based Agency in Emilia Romagna Region, north east of Italy. › Greece: Athens Alzheimer’s Association is a non-profit organisation founded in 2002 by dementia patients' relatives, doctors, psychologists and other health professionals interested in Alzheimer's disease. › UK: Carers UK, a national charity based in the UK, was established in 1965. The partnership report recommended both a campaigning and advocacy organisation approach to working with providers of services to carers and professionals working with carers. This collaboration revealed differential approaches to policy and community support for carers and engaged important discussion for supporting the carers. They focused on strategies for the empowerment of former carers through acknowledgment and enhancement of interpersonal (stress management, negotiation capacities, empathy, organisational skills) and technical (lifting and transferring, medication management) skills acquired in unpaid caring so as to help their transition from caring to post-caring. Through networking and fieldwork in the four countries involved, the partners aimed to develop innovative strategies for the acknowledgment and enhancement of these skills and their use in three areas: (Re)integration into the formal labour market Volunteering in community services Involvement in carers’ organisation Care Alliance Ireland has also established a national research alliance on family carer issues in 2007, with the following key aims: ‘To progress and develop an agreed research agenda within he family carer sector. To facilitate relationship building between community and voluntary organisations, statutory agencies and academics in relation to family carer research issues. To act as a means of sharing research information relating to family carers. To inform and update members of the group on research being carried out in other organisations, which may be relevant to their own work. To work together to develop and promote evidence-based research and publications on family carers, that can be used to support policy and to develop appropriate services. To identify possible gaps in research and help set priorities for new work in the area of family carers. To identify possible relevant research funding opportunities. To develop partnerships for possible future research. To promote the use of research to inform policy and practice in the family carer arena.’ (Care alliance Ireland, 2015) Control of analysis 'For the reader to be able to evaluate the author’s interpretations of the interviews as much as possible of the context, the authors’ perspective, objective, and work procedure is presented. This is done to obtain transparency and to justify interpretations' (Kvale, 2003). The reflexivity influence of the interviewer and author of the study is presented to emphasise the impact of personal views and bias. Myers and Newman (2006) suggested guidelines to assist a critical perspective during interviews and the following analysis and report. To maintain a critical evaluation of the interview schedule questions (Appendix 4) was shown to a number of carers for feedback and analysis and lead to a number of revisions to the question structure and content and the final version being presented with this report. As suggested in previous literature, the data is gained by the interaction between the interviewer and the interviewee (Klein & Myers, 1999). Data Analysis Thematic analysis began when the data were compiled using the semi-structured interview guide. 'Interviews were transcribed verbatim based on predetermined rules of transcription decided by the interviewer. The rules are described as follows: a) The interviews are transcribed verbatim. b) No interpretation of meaning must be done by the transcriber. It is important that the informants own statements are put forward. c) The transcriptions are divided so that it is obvious who is talking. The researcher and the informant are initially marked by their (or their synonym) initials. d) When the dialogue change from informant to researcher line is changed. e) Breaks and pauses for thought are marked by … f) Linguistic contamination as “er” or other words with no meaning to the context are left out of the transcription.' Rules of transcription (Gubrium & Holstein, 2001)  Reflexive Analysis: My own personal experience as a young carer and adult carer has had a significant impact on my perspective, methodological bias and subsequent interaction with the interviews and analysis. I attempted to balance my questions and focus of the study by engaging other colleagues and students in reflection and feedback, and asking the carers themselves on how best to approach the questionnaire, which proved to be very useful and valuable in gaining reminded of my own influence on the report and interview and missed the balance and assistance from a colleague in the interview and did my best to approach the carers themselves and gain a rapport before the interview. The interviews themselves reminded me of the intense experience of a sensitive time that carers endure, who found the interviews very rewarding and engaging. In recording the real experience of the carers, I maintained my focus in the aims of this study and allowed as much flexibility as possible by responding to the interviews independently. Due to the nature of the study, generalisations cannot be made due to the number of carers involved and level of demographic involvement. However, important discussions and results can be seen from this study and I would hope that this would encourage others to further investigate and strengthen the need for more support of carers of all age’s especially young adult carers. A final note is to recognise how influential I have been in the interviews and analysis of the material, in qualitative research we must always keep in mind that we are a major part of the process and ultimately the best methodological approaches are subject to our own interpretation and perspectives. Ideally an inter-collaborative team from differing disciplines would be useful to counter balance perspectives and institutional and methodological bias.  4.0 Phase 1 – Semi-structured interviews + Thematic analysis The interviews took place over a period of 12 months, at various carers’ centres and on campus locations, home visits which was most comfortable and convenient for the carers involved. The three main theme areas discussed were Wellbeing, mental health and Social inclusion/Exclusion. 1) Wellbeing The twenty carers reported a number of problems and challenges faced but the most recurring ones identified were: Theme 1a: Demands and uncertainty around time The carers expressed their experiences of schooling, college, volunteering and working and how their caring directly impacted on these; many reported that schools and employers were either unaware or non-supportive of their roles which lead to withdrawal and isolation for the carer. This lack of support is reflected in the NIACE (2011, 2013) reports on social and academic isolation of carers especially for young adult carers which also highlighted a link between stress and lack of support especially financial, in education. 'I: Erm, I mean did the school even try and keep in contact with you if you wanted to learn at home? P: No, they didn’t do anything to help, I mean my dad rang the education government and got nothing. They said we’ll have to pay for the GCSE’s, which we did I think it cost us all together over a thousand pounds. Which to say that was mostly our food budget that didn’t go down too well (laughs)' The carers themselves often do not identify with the ambiguous and constantly changing definition of carers especially in minority or isolated groups such as young or young adult carers. A recurring theme arising in the qualitative results was the uncertainty of the commitment of the carers on a daily and weekly basis. How do you recognise informal care and duties such as listening, caring and supporting that do not conform to checklists and forms? Often carers and their cared for person need to be assessed and understood by employers, government agencies and educational institutions with regards to the need of the carer to be flexible for their cared person. This can often mean taking extended time off for an emergency or relapse in the condition. This also impacts on relationships and social connectedness when the carer becomes confined due to the immediacies of their duties. ‘P: Erm, oh god I used to care 24 bloody 7 (laughs). Erm it was like having a child erm, the roles completely reversed. I was looking after him and paying the bills and making the house was warm, cooking tea so it was like a 24/7 having a child. Erm, and now at the current moment I’m probably caring a few hours a week.’ 'Yeah it’s all good them saying you should get work but you’re commitments a carer can do two hours one week and then two hundred hours the next week can’t they. I mean they all depend on how things progress. Erm, I mean how did you find with friendships because like you said you really had to' Due to the changing nature of the caring commitment, engagements were always subject to change. The carers putting their cared person first; this was not always understood by others and impacted areas such as education, wellbeing and interaction. 'P: Yeah it did massively erm, more due to the fact that I didn’t really know how to cope with it, and I coped with in ways that I shouldn’t have which then affected my school work and stuff. So yeah…' P: Erm, yeah it did, the care role got more intense and my mental health was slipping as well and obviously I’ve been caring for nearly 3 or 4 years without any sort of release or time to talk about it so it was really difficult and it started getting on top of me quite a bit. Erm, and I think it was the fact that I’d gone from a school where I was deputy head girl so I was very highly responsible for a lot of things and then going to a big massive college where I didn’t know anybody and it was subjects that I didn’t really know anything about and I needed the support and the support just wasn’t there and it all started to get on top of me and I missed lots of time off college, it was a nightmare really.’ The carers reported an anxiety and lack of uncertainty over their future and ability to plan accordingly. This has a direct impact on career and life goal setting which is reflected in the interviews and focus groups further on, with carers reporting that sufficient support and advice is crucial to keep them focused and aiming towards new goals despite challenges and commitments. 'P: Yeah, if someone could tell me like you’ll have to go through this for six more years and then she’ll be better that’s fine, or you’ll have to go through this for like for ten more years then that would be fine but it’s just the, you never know and each time it gets closer together and it’s worse and it’s just it is, it’s the uncertainty that’s horrible' Carers reported the perception of having choice and determination in their caring role as affecting their wellbeing, even perceived opportunities such as learning and career were seen as essential as being in control even when you are a primary carer with heavy demands on time and energy. ‘P: then if they’re like the primary carer and there’s no one else who can kind of take up that role then there’s no chance of them getting a break and it’s not healthy at all.’ Theme 1b: Financial and supporting failures From the beginning, carers reported upon taking the role which meant a huge change in their lives and how they were ignored by medical, education and national agencies which lead to a feeling of misunderstanding, financial and mental strain. In certain interviews, the need to keep their caring duties separate from their lives was expressed as a need to maintain normal relationships with others and keep a very personal matter confidential. The lack of understanding from support agencies and national government leads to the carer and cared for person not being recognised and even facing financial strain as a result of their caring role. 'P: I mean I’ve always been a work, I mean I’ve worked ever since until caring, I mean now it’s got as I’ve got older it’s got harder to deal with financials because obviously everything gets more expensive because obviously you have to past you test. I: Yeah P: and then there are mortgages to pay for and then there’s the future to think about, and I can’t think about it because I can’t go anywhere to think it. I’m going to ever make that money to do anything yet. And that’s stressful in its self just even thinking about it.' The lack of awareness from employers and educators allows carers to feel at risk of losing their job or education when a sudden caring need interrupts their schedule. The financial support available is reported as rarely providing sufficient needs especially when extra support is needed at home. ‘P: Yeah, and also if you’re working you don’t get carers allowance if you’re like in certain situations and I was like working at a job so I’d be working a Thursday night for like sometimes two hours, Friday night two hours and then Saturday all day. But I was only young so I was only getting small amount of money but it wasn’t enough to cover like anything (laughs) like, nothing really like, little things for myself. So it was, yeah money was a massive issue I think for every carer.' The financial impact of caring is not reflected in current policy and serious failings are apparent upon talking with the carers. Many have to support themselves and their cared for persons on their own salary until the illness is recognised or their status acknowledged. The carers showed anxiety over the lack of financial support and governmental support towards them. The carers centre which is the primary voice for carers who have to source funding to survive, and other dedicated departments such as social services, care plans were understood to be lacking in delivery and recognition of the carer and cared for person. With the changes in cared person and carer assessments for carers allowance and PIP applications through outsourcing companies such as ATOS (2014) can lead to the carers feeling isolated or vulnerable when their finances are insufficient. 'P: no I couldn’t get a job we couldn’t claim anything back then because they wouldn’t help with anything and at my age I didn’t really understand any of the forms they were giving us, so yeah just made do with what we had.' Carers reported the need for a social group and support especially when applying for help regarding finances and accessing financial aid from government and agencies. The need for recognition is as much psychological as it is financial when carers are feeling isolated and under pressure. 'P: and then there are mortgages to pay for and then there’s the future to think about, and I can’t think about it because I can’t go anywhere to think it. I’m going to ever make that money to do anything yet. And that’s stressful in its self just even thinking about it.' ---REPEATED ABOVE?? Being made aware of the support and accessing it remained a serious problem for carers, they reported the need for other carers and informed centre staff. Being aware of the definition of being a carer and then accessing the support is difficult enough which leads to the need for their cared for person being recognised for financial support and continuing support through being informed of changes and definitions. Recent agendas driving recognitions of cared persons emphasise the need for consultations with the carers themselves to include them in the future recognition and accessability criteria would help to alleviate their isolation from mainstream support departments. Social support for adaption of housing and mobility was often discussed as being inappropriate or incomplete in its assessment, solution and follow-up in many of the interviews. Only after advice from the carers centre or a third party agency to inform the full range of available adaption lead to the carers defending their decision. 'P: And yeh, I went a year without payment before realising there was all the help and everything. And obviously now I’ve got all the aids in place in the flat but I wouldn’t have had them if it wasn’t for the help of the people in the care section. Assessments for disablement and recognition of illness is now achieved through a outsourced company ATOS whose approach was critised by the carers for making support inaccessible and now always achievable. The isolated approach does not take into account the full range of health complications that can occur across a spectrum of a carers’ duties and they are still not allowed to be fully recognised as experts in the health provision when dealing with assessments and recognition of disablement and illness. ‘P: Yeah and if you fill out the form and they come in and check on you on a good day then that’s it you get done for kind of messing them and everything gets revoked. So yeah I think they could be a bit more supportive. Like they do offer quite a bit of money, I mean if you look at it they’ve got numerous kinds of forms to fill in. But they don’t really kind of make it accessible to most people. They just like I said they cater for the worst kind of things and don’t look at the other. Like I know, I think Alzheimer’s, Dementia doesn’t always qualify. But I know another person who sort of looks after a family member who can’t remember their own name can’t remember what year it is, still living sometime back in the 40s can’t handle gas cookers food or anything, but are still qualified as able to work.’ Theme 1c. Recognising the carer and caring impacts Carers still reported a transitional period of differing lengths relating to how they are finally recognising of their own worth and wellbeing as a carer. Many carers do not recognising their own worth as a carer due to the perception of carers and impact of accepting that label. They have specific expert knowledge and insight into the cared for person’s life and in relation to illness specific outcomes and health measures they remain the most informed person on the impacts of caring. ‘I didn’t class myself as a carer for years, like I didn’t take the label I didn’t want the label, I didn’t see myself as being a carer for me it was just my mum was ill and I’m helping her through it that’s what you do because that’s family.’ ‘but also I think it’s because the person that they’re caring for doesn’t want to feel the shame of it. So it has to be this little secret for people and it’s really sad. I: I mean mental health is still really taboo isn’t it people just don’t understand bipolar schizophrenia, it’s a label and you know if people replied to that. P: I mean I think it’s the whole negativity outweighs the positive thing, so there’s been so many like, schizophrenic murderers, but there’s been no one that’s come out with a positive. Like yeah I’ve been diagnosed with schizophrenia but look at my life, it’s amazing. And there’s a lot of people like that, that have overcome it. Erm, but it’s just not been brought to the attention of everyone.’ Changing the perception of carers and becoming more accepted was reported as a definite impact of caring. By engaging in centre duties and consultations the young adult carers believed they were making a contribution to changing the current perception of carers and creating more opportunities for themselves and others in the future. (Also reported in the focus group consultations following these interviews) –reference? ‘P2: I think a lot of people despite having disabilities or issues with mental health, a lot of people just want to be accepted. You know if they felt socially accepted, then they wouldn’t have such anxiety would they, about being around other people. I think that would help a lot of people.’ Wellbeing was integrated with the recognition of being a carer and the understanding of all the roles you have to undertake. Being aware of caring beyond the official or public understanding of the term was important of the transition to identifying and also accepting support. This lead to increased wellbeing being reported by the carer and in some cases the cared for person. ‘I didn’t know I was a carer until erm, about 18 months ago. So before then I just thought my dad drinks a lot erm which he did, but I didn’t think that because I did all of these things it made me a carer as such, because I always thought a carer was looking after somebody with disability or erm, a mental illness you know. I never thought that substance abuse would make you a carer.’ Some of the young adult carers described having two lives or two faces to show to other people especially in formal settings for example school or work settings. The difficulty of keeping the caring life a secret, created a wellbeing influence and once these were addressed in counselling or support it lead to a more balanced outlook reflected in the interviews. When the support was withdrawn at education, society or work settings it had a dramatic impact on their wellbeing and aspirations. ‘I: I mean it’s like a second life really isn’t it, you know. P: Yeah it was trying to keep a happy medium between being who I was at school and then not letting my home life affect how I was and sometimes it was college the most of it, where it all came out, because I had the support at school and I knew that I was safe there and I knew everybody and I had high aspirations while I was still at school. So, it was alright then it was just at college that it start to slip really (laughs).’ 2) Mental Health Carers showed a remarkable resilience and motivation in spite of the demands and intensity of their duty, they remarked on the negative and positive aspects resulting from their daily lives. In education and work, the impacts of caring appeared to be both positive and negative – participants talked of their positive experiences and the help they received, on the one hand, but also about their absences from school or being distracted in school as a result of their caring work which then affected their mental health. Theme 2a. Motivation and Energy Focus and drive were both highlighted as part of the skills achieved by the carers. This is suggested in prior studies (Pakenham, 2005b; Pakenham et al, 2007) but the drain on energy is an important factor of the role strain and contact time reflected in the caring model (Treasure et al, 2007) with carers becoming at times overwhelmed or exhausted due to a lack of support. 'P: because hes just not been not well so yeah but your motivation it does seem to sort of push because you want to kind of achieve so one they’re actually proud of you and so you can support them when it kind of, when, if it gets worse.' Carers reported motivation, resilience and renewed confidence and change as a result of their caring duties which manifested itself in their personality and approach to goal-setting in arenas of work, education, life and relationships. They highlight a common theme of being a unique group with a perspective on life, which they share through a common bond. Often, this is reported as energy and enthusiasm in their own words or feeling a sense of pride in the cared for person being proud of their efforts. 'I: I mean you already mentioned about motivation and energy earlier, as a carer. I mean do you find yourself a lot more focused on what you want now after having been through it? P: I am now yeah, definitely and obviously, because it still continues it just drives me forward to what I want to do' ‘P: because hes just not been not well so yeah but your motivation it does seem to sort of push because you want to kind of achieve so one they’re actually proud of you and so you can support them when it kind of, when, if it gets worse.’ –REPEATED ABOVE Theme 2b. Changes as a person The caring role was described as a journey of transition and reflects the carers’ resilience to adapt to the needs of their cared for person. Skovdal (2009) suggested coping with adversity through positive change. I would emphasise that support is crucial to young adult carers to ensure that their needs are met to ensure that changes are positive. 'P: I’ve always paid for everything myself, I’ve never depended on anyone. That’s one good thing I guess I got out of it, like it got attitude to like get up and go' How they changed as individuals is a humbling and sobering experience. They reported an array of positive changes, which reflected their own resilience and determination to remain positive about difficulties and challenges. Many carers reported it as a journey or story, which allowed them to grow up and become more independent and a ‘better person’. 'P: Which is one of the reasons for skydiving. But no I think overall it’s made me a better person. I: Really? Okay. ‘P: Yeah it took a while I mean I got knocked down a few times got push back but, yeah I’d say it helped quite a bit. I: Would you say it’s been a journey then or? P: Yeah, journey uphill barefoot on glass (laughs) but yeah it’s been a journey'. ‘P: Like, because everyone has got their own sort of story and their own goings on and also it’s sort of opening my eyes to like, anything can happen to anyone at any time. Erm, (pause) just I think a lot of things, it just made me grow up in many ways. I don’t know how I would have got on if I wasn’t, if I didn’t end up caring but it has brought me up in sort of a good way I guess.’ This maturation was not always reported positively by the young adult carers, those who started very young and maintained a ‘full time’ carers workload believed that their own childhood was sacrificed for the sudden change to caring. Even with this perspective, the young adult carer held no regrets but a simple acknowledgement of the fact. ‘P: Yeah I’ve suddenly become an adult, and I feel like I became an adult like a bit too soon for me. So, I grew up sort of dealing with bills and making phone calls and writing letters when I shouldn’t have been doing that and then, I think I started to have fun and then I had to become this person who dealt with it all again.’ Perspective was reported as crucial to the young adult carers when gaining meaning or positive change on the caring duty. This perspective or opportunity was based in the need to help others for a variety of reasons or motivations but was often reported as helping the carer become more aware, sensitive and caring. 'P: Erm, (pause) so yeah everything has become an opportunity to be positive, so if you’re given the opportunity to be positive then you can help other people. And that’s what I like to do, I like to help other people and I think that’s probably because I’ve helped my mum for a long time but it’s made me more sensitive and more caring.' Child carers are often cited as having to grow up quickly and missing out on childhood experience according to their words (Department of Health, 2010) and the young adult carers reported the same process from child caring and continuing into the young adult phase many citing the development as positive to be used for the help of other people. ‘P: It’s helped me to grow up a lot and understand that life isn’t perfect but, it doesn’t have to be perfect for it to be happy. Erm, (pause) so yeah everything has become an opportunity to be positive, so if you’re given the opportunity to be positive then you can help other people. And that’s what I like to do, I like to help other people and I think that’s probably because I’ve helped my mum for a long time but it’s made me more sensitive and more caring.’ While becoming more aware and caring, responsibility and autonomy were reported in a number of interviews as a result of their caring. This allowed the carers to make informed choices and at times difficult choices involving planning, time management and financial decisions. ‘P: Well, I think it made me a bit more responsible I think now the way I look at things like I used my money, like if I get any money now I don’t go out and just spend it, I made a tenner last three or four weeks once’. The approaches and coping decisions reported by the young adult carers are simply astounding and reveal each carers’ unique experience and resilience as informed individuals. Often they have to deal with extreme constraints involving life threatening conditions due to a lack of accessible support which is reported again as having to mature quickly and respond according to the ever changing relationship with their cared for person’s situation. ‘P: Yeah, yeah even like a voucher or something just to put towards it because luckily my dad doesn’t have many nutritional problems, he’s diabetic as well so, but lack of sugar is easy to buy for so but they do kind of add sort of 20p to say they’ve taken away an ingredient, so just something to kind of just knock that down a bit.’ Carers reported that their own experience and perspective allowed them to connect with other carers more easily and emphasise with their difficulties. This unseen bond was apparent in the focus groups leading from the interviews reported in their behaviour and attitude towards one another. Often carers find talking about their experiences very difficult and distressing, given the fact that the caring life is so personal and intimidate which encompasses many difficulties and hardships, which they feel others would have difficulty relating to. The carers centre and social media allows an essential social break and ability to form and maintain relationships which otherwise would not exist due to caring commitments in the home. ‘P: Yeah erm, and (stutters) I can’t ever thank him for what he’s done but in a way I can because I’ve achieved so much and I’ve done things I would never have ever, I got involved with the carers centre and I’ve worked with a carers trust in London working with all grants for 24 carers centres in the UK and I sat there and had a big part in whether it’s right to fund it or not. It’s fantastic knowing that I was a part of that and I’m glad that it did happen because it’s made me who I am and it’s made me such a stronger person and I’m much more mature than the rest of my 19 year old friends and it was a life experience so I wouldn’t take back, or even all the times I’ve cried and thrown punches at the wall, it makes it all worth it when you come to the end and it makes it better (laughs)’. Theme 2c. Mental health and social support. Where possible, the mental health impact when shared, proved to have a positive effect for carers, yet others reported more difficulties as a part of their role. Isolation and lack of communication can lead to carers withdrawing from schools, education, work and support programs. Social breaks and support were reported as essential to the carers mental health and wellbeing in allowing the opportunity to meet others and allow a social life to function. Exercise and food is often reported as being linked with mental health and wellbeing and was often highlighted in the themes expressed by the carers. This became especially clear when the exercise took place in a supportive environment with the ability to meet new people or continue relationships. 'P: Because for mental health problems that’s meant to be a good thing, so we had like gym memberships together and that was more for her benefit like to try and get her out of the house like and for her to do exercise because it’s meant to release happy endorphins and help (laughs) so, it was like anything to, so we used to do like swimming, spinning, gym stuff like that. I: Yeah P: But like I said it was more sort of for her benefit rather than my own.' Mental health was reported as being individual and personal with specific needs for a tailored personal support programme. Young adult carers who deal with a person with a mental health condition also emphasise the strain on their own mental health and a real need to understand the positive and negative implications of mental health issues and how to access support and meetings. 'P: (Interrupts) a couple of meetings for carers for people with mental health problems. So I met, before I’ve met with carers for people with disabilities. Whereas erm, then I had a couple of carers meetings with people who care for people with mental illness which intrigues me because what they go through is very similar but they feel like it’s very different.' The carers were very specific regarding the need for a positive approach to mental health and avoiding the medical or clinical model of mental health, which often links terms and words with negative images for the carers and cared for persons themselves. This negative image relates to stigma and ignorance by the public and impacts on the carer’s self-image; their ability to relate and discuss the issue with other people outside the caring circle. 'P: Like yeah I’ve been diagnosed with schizophrenia but look at my life, it’s amazing. And there’s a lot of people like that, that have overcome it. Erm, but it’s just not been brought to the attention of everyone.' Specifically, carers or their families dealing with mental health need to have access to specialist support programs. The ability to share problems is highlighted by the carers as essential and is highlighted in the coping model as illness related indirect control. The need for social sharing and friendships was integral to the carers. Close family and friends were reported as being critical to their wellbeing and often being their only source of support. 'P: So, erm, it was a tough time of year, as in those periods because I only had the boyfriend I’m with, my boyfriend who I’m with now still, and he was the only support that I had'. The young adult carers reported friendships as being valuable and essential to their support. The friends were viewed with value given their motivation and understanding of their situation, this was often the most re-assuring continuity of the carers lives given the difficulty in forming new relationships and discussing their life with strangers. 'P: so that where like if I didn’t have my friends supporting me through it I don’t know like how I would have got through it because they played a big part in just keeping me like on the right track'. 'P: Yeah and my other friend she’s got a little girl so she’s, but she works for time and erm, so, But yeah so, but I don’t see it, I wouldn’t cope with it like my partner for support because he is my god send because I don’t know a lot of people that would put up with half the stuff he had to put up with'. The carer friends were given a distinction immediately when discussed in the interviews as understanding immediately how quickly situations can change due to the commitment of the caring life, this social thinking translates immediately in direct or indirect understanding. 'I: Gosh yeah. But that must make erm, well it must be reassuring to know that they know where you’re coming from because they’re doing it themselves. (Referring to carer friends). P: Yeah, weird though sometimes like we’ve got a room full of constantly on edge people so every time a phone goes off everybody freaks out (laughs) and then we’ll jump up and leap to the door.' When the carers faced a mental health issue and approach the conventional health services they were met with negative replies especially when they were perceived as young carers. One young adult carer reported that when they turned 16 years of age they were offered anti-depressant medication by medical services without any explanation, advice or alternative support potentially leading to negative mental health implications. ‘P: Erm, well I went to the doctors, the first time I went to the doctors I was probably about 15 erm, and I said to him I think I’m depressed and my doctor said you’re too young to be depressed you’re just sad. So erm, at 15 I thought I must just be sad so that got pushed to the back of my mind and just carried on with what I was doing. And when I went back when I was, I would have been 16 erm, and I said I couldn’t cope and I was having all these thoughts erm, and it was getting to the point where I was angry and I smashed mirrors and that wouldn’t, I’m not that sort of person and that’s what it had made me into. Erm, and he said to me oh right oh yeah we think you’ve got depression so they gave me some anti-depressants, 232 they didn’t tell me any side effects they didn’t offer my any counselling… I : (Interrupts) that was going to be the next question yeah. P: Yeah they didn’t say anything like that they just gave me the tablets, told me to take one a day and we’ll see you in a month. So it was a very very odd experience because these tablets I didn’t know what they were I didn’t know anything. Resulting from the prescription medical model of mental health, which had negative implications on a number of the carers, it was also explained that the doctors made no effort to assess the carers after discharge, monitor their progress through other agencies or even consider the affects the medication was producing. For the young adult carers who were caring for people with a mental health illness, it was described as being isolated and left to the carer themselves to deal with once they were discharged or external patients. For those suffering mental health problems the idea of medication compliance and dependency was concerning. ‘And then at night I used to have night terrors and wake up in fits of sweat, it was a terrifying experience and I didn’t bother going back to my doctors, he put me on a repeat prescription and erm, then luckily at the time I got with somebody who helped me a lot and I think I needed that support to just get me through and then I took myself off them little by little erm, stopped taking them and then (stutters) I got through it. And I still have time now when I think “oh god I feel horrendous” and then I still have days when I feel really down but nothing compared to what I was or anywhere near that.’ One carer described being addicted to the anti-depressants as a numbness or living on automatic pilot and had to reduce their medication through their own methods through perceived lack of support or interest from the support services. They also described the process of being prescribed as being far too easy and the implications of the medication not fully explained, supported or follow-up for a potentially distressed young adult person. ‘Yeah it does and it’s really shocking because, I can see why people get addicted to them and because it’s that numbness of the whole world passing you by and you’re just living, you’re just being rather than living.’ Theme 2d. Sharing the role of carer The ability to seek help and advice and consequently negative comments and relations affect directly the mental attitude and state of the carer as defined in their words. A common occurrence perceived outside interference from third-party persons which could include social and educational institutions which contributed to mental decline and even social isolation. The carers reported that public awareness makes a difference in their openness and decision to integrate with society and even within education and work settings. ‘P: Erm, but by the time I got to year 11, erm, I just wasn’t coping with it or dealing with it very well at all erm, and I just sort of went off track a bit and I think I didn’t got to a few exams or I was so tired in exams that I just couldn’t concentrate, I couldn’t concentrate in classes, erm, I didn’t even want to go to school because it was affect sort of my mental health so I didn’t want to be around people…’ ‘P: Erm, but yeah it is about just people realising what’s going on and then when they do, if they don’t understand what’s actually going on then I don’t really like explaining because it makes me feel awkward and a bit (stutters) I don’t know a bit upset about what’s going on really. (laughs) Finding even one individual who could share the worries or anxieties of the caring life was defined as a real positive influence on the mental health of the young adult carers, especially in the younger age phase when education is so paramount. They voiced their experiences when they met a positive audience which allowed them to continue to engage and share albeit little to begin with; their own experience. The reverse is also true about avoiding conversations and sharing with perceived outsiders that may not understand the carers’ point of view. ‘P: There was not consistency ever, and communication there was a lack in between like teachers and it was just like not useful. They were good in once sense like, because some teacher were aware of it and erm, but I didn’t want the whole school knowing my business, and that was me sort of you know putting up barriers and stopping them I guess from like helping in ways that they probably could have, so… I: Yeah P: But you don’t want people knowing your business and I didn’t want people feeling sorry for me’. ‘P: it is isn’t it I mean it’s alright having these schemes that you can access but actually getting through to a physical person and speaking to them and having that contact.’ This acceptance and sharing of experiences allowed the young adult carers to be more open and honest about their own mental and physical states especially regarding emotional support and practical support (e.g. shopping and medication). ‘P: But yeah and I talk to them and I feel like carers know a lot more of the black and white purposes of what that persons dealing with. But when it comes to the sensitive emotional side it’s more of the person going through it that knows and can be more open and honest about that side. Whereas a carers more open and honest about the practical things and erm, how it affects them.’ Even religious organisations and continuity with environments were reported as having impacts not only on the young adult carers but the cared person’s mental health positively. Many reported that social events in local churches and community centres were essential for their cared person which allowed a much needed social break and the ability to help the mental health of the cared for person. ‘So, we had a lot more understanding from a church that we would from normal society. So that helped me as well erm, and still my mum goes and they help her to get there, they give her lifts to and from and they have a special chair that they’ve bought for her and you know they’ve really made her feel a part of something.’ Allowing the cared for person to engage as much as possible and interact is reported by the carers as a positive encouragement and support. This allows the cared for person to retain autonomy and dignity which impacts the mental wellbeing of the young adult carer especially when a strong bond or relationship existed before the caring stage. ‘P: But, when she does that she can teach someone so she feels like she’s giving her experience and her skills and she’s actually, she’s not just taking from the world but she’s giving back in some way as well so that’s something that she can do that she just gets really accepted for and that makes her feel brilliant and because of that, that makes me feel brilliant, it makes me feel proud of my mum.’ 3) Social inclusion/Exclusion As a result of their experiences, the carers responded very well in highlighting areas for improvement and these themes reflect their voiced concerns. They were very insightful in the need for social and community interaction and recognised instantly the impact and result of isolation or exclusion with regards to multi-level engagements such as relationships, care commitments, breaks and even presentations on raising awareness. ‘P: But my music, I used to gymnastics so that built up my confidence from being about three years old, and now I do singing and I do presentations at work so I always have things that push me to my very limits of how far I can go with my confidence and it makes me a lot stronger and the carers centre have me doing all these different speeches and helping out with different events it’s fantastic because it just gets me involved and builds my confidence in that way as well.’ Theme 3a. Awareness of the person 'carer' Awareness of public and departmental engagement with the carers was cited as vital importance to ensure they are not forgotten or unaware of their rights. As Dowman (2009) and Becker (2008) suggested young adult carers are vulnerable of losing vital support and recognition during caring, especially during work, education and relationships. Institutions such as schools and colleges were reported as having very little awareness and support for the carers and impacted on their recognition. 'P: I think the first big step would be, would be awareness on a you know like we said on like a national scale, on a big scale to make everyone aware of it because you go to like, working at a carers centre obviously you can go to like schools and they’ll be like we have no carers in our school.' The level of work at school, college and employment was cited as being unsustainable when caring demands increased, which often lead to withdrawal and a negative experience. Also reported were the instances where this decline didn’t occur as a result of informed support or a particularly interested teacher/supervisor which took the time to appreciate their demands. ‘I just couldn’t cope with the amount of work I had, and I achieved really high grades at school so, they expected me in college to be able to manage 7 A levels instead of 4 and it was a massive task for me and a huge change that I really couldn’t cope with at all (laughs).’ Counsellors or advisors at school and college level met with differing results depending on their own personal experience of caring. The young adult carers reported occasions where counselling offered was dependant on the counsellor being aware of what the carer dealt with and building a personal bridge, when that was lacking the counselling failed. Many suggested that having a personal experience of caring made a difference in the decision to share their story and having greater respect for counselling staff. Perhaps even allowing the support staff to volunteer for a limited time as a carer would allow for greater insight and bridge the gap between carers and non-carers. ‘P: Yeah, well I asked for the support erm, I got a few counselling sessions but it just wasn’t really for me. Erm, I didn’t like the fact that she was saying that she knew how I felt when inside I was thinking you have no idea how I’m feeling (laughs).’ Many carers revealed that work opportunities had been lost due to employers not understanding or caring about commitments and immediate changes to their schedule. Given the governments massive spending on Reserve Army awareness through SABRE deployment, a similar national awareness policy would be helpful for the carers to gain recognition in the work environment. The need for a flexible working rota or understanding on the employer’s behalf was seen as critical in working conditions. Even self-employment is very rarely encouraged or supported at local council, college or university communities which could allow more opportunities for carers who have such a changing demand and time-strain. 'P: It wouldn’t do any harm just inform people sort of what it is and like why some employees wouldn’t be able to turn up this time or may be five minutes late some days.' The carers centre was reported as raising awareness through their network and viewed positively by the young adult carers. Also, inclusion in the collaboration and consultation process allowed the carers to understand more about their own access and have a direct influence on their social acceptance. This acceptance by the carers centre and other agencies impacted directly on their social inclusion as part of resident visits, social breaks and accessing other networks for support. During my time at the carers centre, two national campaigns were run and reported by the carers indirectly in the interviews. 'P: But carers I mean we’re not recognised. But I can say and I can’t say it because obviously I’ve been recognised for what I do. I: Yeah but that’s that circle isn’t it. P: (Interrupts) but that’s because I’ve got the support from. Because I’ve got the support from the carers centre.' This collaboration and empowerment of the carers through the centre and charity has had the biggest impact on allowing them to be involved in the awareness of the carers. It was reported as making a significant difference to the young adult carers and directly influenced their motivation and career focus. ‘No and without the carers centre and the effort that they’ve put in, nobody would be aware of it. And like, big massive companies are noticing that they’re doing it, and schools are getting on board, letting them in and it’s fantastic that they’re managing to do it all really. I: Yeah, I mean would you say there are any controls over your life and choices now, I mean the role has changed since you first… And erm, it does make a massive difference. And I’m so career focused now, it’s erm, I know where I want to go in life and I know what I want to do, and that makes a huge difference to how I was really.’ ‘I mean this is the big problem carers they don’t know that they are caring, and then when they are aware of it’s the support like carers centre they might not even be aware of that isn’t publicised.’ When the young adult carers discussed raising awareness they spoke positively of their own experiences of visiting schools and communities to speak of their own experiences as a group. This was also demonstrated in the interviews and the need for including companies was cited as critical in developing a national strategy for the future. ‘P: Erm, in my opinion it’s just having the knowledge and getting it out to people erm, making everybody understand what it is, what it involves and getting it out to schools so they can recognise what aspects of like school day to day some people might struggle with that is a major sign of being a carer, and then finding the way to acknowledge them and find those hidden carers really. And just getting them more support because the more companies that get on board with it the more avenues you have to go down and it’s just a general better opportunity for everybody that cares really.’ Theme 3b. Social breaks and flexibility Being isolated from social events and activities were highlighted in the interviews as being influential in the mental well-being as an adult and as a child while attending school. The carers now identified the local carers centre as being a valuable resource for meeting local carers and accessing much needed breaks. 'I: Maybe like a cafeteria subsidised for carers or … P: Yeah the social thing as well, because people going out and see other people and same situation.' Caring was shown to have a direct impact on relationships and social flexibility. The carers centre offered a respite break system and a residential week which was shown in a periodical magazine and was always reported favourable in the group discussions of the young adult carers and offered a sense of wellbeing and positive experience. A number of carers reported no opportunity to take time away from the home except from essential trips which made the need for home help and breaks essential by support services. 'I: I mean how did you find caring impacted on relationships and friendships? P: Erm, I have no social life (laughs) I don’t have a social life. Well I have two best friends.' 'P: So we go to the zoo and I have been with the carers centres, actually that’s another group trip which I did go on I went to the zoo. Yeah it was so funny, it was such a good day, ' The carers stated that the immediate transition to caring can have serious impacts on social isolation and access to breaks and flexibility of caring through support is essential as soon as possible. If left isolated, it can form a pattern which influences the carer. ‘I: I mean breaks are important aren’t they just to be able to step outside the routine. P: Yeah, I think what I found was that I stayed in so much with my mum that I became scared of going out, especially of going out on my own as well. I pretty much became reclusive so much to the point that it was my own little world and I could control things and I knew what I could do to make things better or worse but outside I couldn’t control anything. And I had people judging me and looking at me different, so it became really hard for me to go outside on my own.’ ‘I: I think you’ve come a long way with that. In the last two years you’ve grown out of that. P: Yeah, but still when I stay in too long if I’ve been ill for like two weeks, id find it hard to go back out on my own again. So I think if you get into that routine and if someone’s in that for a long time you don’t think about just stepping outside, you don’t think you know, how difficult it is for someone.’ Specific breaks such as training or creative events had a long lasting impact on the carers in allowing them to try new possibilities and skills in an encouraging environment. ‘P: Erm, well I do a lot of music erm, I play the guitar and sing so that’s’ always been my kind of break from everything because as soon as I start playing that I’m not me anymore I’m not where I am, I’m where the songs taking me. Erm, and that’s always been fantastic for me I got to a lot of open mic nights and socialise with a lot of people that do music and that’s fantastic for me. Erm, and obviously what they do here is fantastic but outside it’s just something that gives you a bit of time to be yourself and realise that you’ve got a life as well, as well as the caring role.’ Theme 3c. Carer as informed individuals The carers identified their experience and resulting knowledge as being essential to the well-being of the person cared for. Policies and agencies which they deal with were reported as being ignorant or not recognising their perspectives and voices and more engagement with carers being active agents of essential care was highlighted as a theme. 'P: if I’m good enough to look after her and give her medications I think I’m good enough for you to acknowledge me and you know. But the McMillan nurse she did and she was great at that.' ‘So because erm she can’t read or write very well, I have to do it for her, and to apply for things for disability and allowance you have to fill out a lot of forms. Erm, and if you don’t know how to do it properly, if you’re not an expect at it then you don’t get through. So it’s taken us about 5 years to get her on the right benefit for her, so we were really struggling, because I couldn’t stay In a job for too long because I had to look after my mum.’ True partnerships and recognition of their background as experts of care for their cared for person remain integral to any support and consultation to the carers. Health and support services, which are viewed positively by the carers have this approach central in their dealings with the carers and integrate them as informed individuals with essential knowledge to offer. In particular the carers centre employs young adult carers in a work experience placement for 6 months to allow them to directly influence the charity in new directions and perspectives. ‘P: So erm, that was the sort of realisation oh right, and then understanding what a carer role was, what it involved doing. And the support that you get is just phenomenal; it’s just trying to find it. Erm, but they do a fantastic job and that’s why I help out as much as I can and do everything that I can to support it because they did so much for me.’ 'P: with forms and things I mean like Blackpool Carers have helped me a lot they’ve helped me find out who to ring, who to contact but when you actually get through to them sometimes they’re just so (pause) they avoid everything. Or they transfer you through sometimes through five, six different lines.' The carers reported serious failings in the overlap between agencies and national support and gave significant feedback and consideration to the problems faced in multi-agency approaches. 'P: Yeah and erm, it’s fantastic to say that they’re trying so hard and making so many connections to support anybody that comes along that’s in this situation because other than the carers centre there’s not much that people do.' Theme 3d. Education and work isolation In line with findings from NIACE (2008, 2009, 2010, 2013) and qualitative research (Becker, 2010, 2012; DoH, 2010, 2013) the carers reported a range of issues relating directly to social functioning from work and education. A recurring theme relating to education was a lack of support and if the carer becomes home-bound or isolated due to emerging commitments very little support is offered to motivate and engage the carer to return or present the carer’s assessment. ‘I : Erm, I mean did the school even try and keep in contact with you if you wanted to learn at home? P: No, they didn’t do anything to help, I mean my dad rang the education government and got nothing. They said we’ll have to pay for the GCSE’s, which we did I think it cost us all together over a thousand pounds. Which to say that was mostly our food budget that didn’t go down too well (laughs).’ ‘P: Yeah I wanted to make something and then yeah, to support my dad and everything. But at that age it wasn’t as easy as It looked (laughs). So I’d end up finding ways just to make money. Not always legally (laughs) well not illegally but kind of not always by the books… I: Yeah like you said the legal options weren’t feasible were they you know. P: no I couldn’t get a job we couldn’t claim anything back then because they wouldn’t help with anything and at my age I didn’t really understand any of the forms they were giving us, so yeah just made do with what we had.’ Despite changes in the care act and recent legislation being recognised and supported at education and work is still reported as being problematic by young adult carers. Even when employers or educators are aware of carers the level of understanding is insufficient and shows a lack of consideration. ‘P: Yeah I’d definitely say that people, especially like employers or colleges need to know a little bit more about people who care for like relatives or friends because well they don’t seem to understand it that well. They just blank it out. Like they’ll say oh yeah you can have the odd 30 hour here or an extra 20 minutes on your break, but that does nothing.’ When the carers focus entirely on supporting one or many persons who become their entire world without sufficient breaks for many years; their ability to make friends and gain social skills is seriously impacted. Many reported that making friends was very difficult and engaging in social interaction and relationships almost impossible. Many young adult carers reported the bond and support within their own group at the local carers centre essential to building the skills to function socially and gain new friends in new environments through group trips and visits. ‘P: And it’s still a bit tight but I think when you are a carer you’re not prepared for the world. Erm, and it sounds really silly I think with the social aspect for me personally, because I couldn’t keep friends because I was always with my mum, I found it difficult to make friends in the work place, and I found it difficult to put myself across to people in an interview, that I wanted to work. So I ended up getting lower grade jobs just because it was something that I had to do and I couldn’t be around a lot of people at one, because I couldn’t take directions’. Young adult carers reported issues with funding in recent changes in college and university, as a result many young adult carers were left isolated and unable to afford educational costs even if their cared for person and carer role was assessed and awarded. The assessment and support for the cared person, carer status and ability to find opportunities all had an impact on the wellbeing and mental health of the young adult carers. With many courses loosing social support funding and the withdrawal of carers support this further isolates the carers from traditional opportunities. ‘P: I was really wracking my brain today because I found out about that course not being free. And erm, I was like I don’t know what I’m going to do because I’ve wasted nearly two months waiting for that course. I2: Did she ask what sort of benefits you were on? P: Yeah she did, she said erm, what benefits you on are you on job seekers? And I went no I’m not on them, I’m only on carer’s allowance. And she went ah, well because you’re entitled to any benefits, you’re not entitled to have this course for free.’ ‘P: So I’m finding now that I have to pay for a course, because I’m not on any benefits and we haven’t got the money to pay for the course, just because I should have done it when I was younger.’ When educational institutions did offer support it was often limited and not evaluated as found in previous reports (NIACE, 2008, 2010, 2012) which left the young adult carers in a worst state of isolation after being ignored. Also reported was the impact on confidence and motivation as a result. ‘And then when I did get the extra support for my coursework because I’d missed two sessions from staying up till 5 o’clock in the morning waiting for my dad erm, they told me I was time waiting so took the extra support off me. .I: Charming P: Yeah so from that I didn’t go in for 10 weeks, they didn’t tell, they didn’t contact any of my parents the fact that I’d been off for 10 weeks and then sat my exams and got all E’s and U’s (laughs). Which from, I was an A star student at high school, and going from that and then a year later getting E’s and U’s was a massive confidence blow (laughs).’ Theme 3e. Gender in carer’s identity Female participants appeared to identify more with the stereotypical image of the carer role and agreed with the public perception of carers being predominantly female. This gender bias helped to influence self-acceptance of the carer label and even isolate some young adult carers for years. P: I actually this might be taken the wrong way but I actually think the public looks more towards carers being women.’ ===Check quotes Interestingly male carers responded more to the questions on gender perception on carer identification rather than the female carers. This was suggestive of future research consideration and the image of carers as a nation. The quotation below is from one of the few male young adult carers at phase 1 and is particularly relevant. ‘P: like I think because they seem more sensitive more caring and they’ll be the ones who kind of do all the work. I: Yeah P: This probably, if you looked at the statistics is true. But I think male carers do a lot as well. Like myself and my step brother, most of the time we’re just at home. And he has a hard time because it’s his mum so he’s like to get her showered sometimes and like get her dressed I know it used to drive him mad. The understanding of the carers was that there was no difference in gender in the role of carer as you’re motivation for the person cared for is the same. It was a shared understanding between the carers, even when they perceived the female sex being more identified with the public image of a caring carer. ‘I: Erm, I mean would you say gender has an impact on your role as a carer for yourself? P: Erm, not particularly no, I think everybody cares the same from when you’re in that situation it doesn’t matter how old you are, how young you are, whether you’re male or female it really doesn’t matter, you do what you do and you only it because it’s somebody you love and you wouldn’t do it otherwise.’ The pilot dissertation study and this PhD received more responses by female rather than male participants which followed previous demographics in academia (Becker, 2010, 2012, 2013) especially in the qualitative methodology.  5.0 Phase 2 – Focus group collaboration and analysis The four focus groups each contained 8-15 young adult carers and responded to topic areas of mental health/wellbeing and isolation as a result of the consultations led by the carers centre staff, additionally the researcher was allowed to engage and offer questions as an observer. To satisfy the aims, the four focus groups were held with carers currently accessing support through carers' centres and were effective in exploring perceptions, feelings and motivations, making them ideally suited to this project. The focus group approach allowed those young adult carers to engage in a different environment and allowed them autonomy over the discussion for greater flexibility and control. In addition, focus groups, by their very nature, encourage discussion and debate among participants and this aspect was well received in the feedback following the discussions. The carers were recruited directly by the carers' centres and took place at: • Preston – 12 July • Accrington – 17 July • Garstang – 19 July • Blackpool – 19 Nov The focus groups questioning will be explained in three headings relating to the carers responses to how services could better serve their needs and themes arising from the research.  What services/support are missing? The carers felt that services and support were an essential component leading to isolation and their wellbeing directly and this was discussed at length, offering interesting insights into definition age discrimination, lack of mental health awareness and gaps in targeted support for wellbeing/mental health across all ages which included failures in assessments and recognition of the carers themselves. Educational and institutional support failures were highlighted and the carers centres themselves were cited as an essential influence on wellbeing support. - Lack of mental health for ages below the age of 18, especially for the young kids and things, the support isn't too great either for children in primary school. - A huge gap in services for well-being and mental health of all ages. Unless you are at ‘crisis’ point or aren’t ‘mentally ill enough’ you’re on your own. I waiting months for a mental-health assessment, rang every day, It took actually harming myself for something to finally be done. There is a great lack of awareness for young people’s problems in schools and colleges, if you’re late or misbehaving or not achieving, you’re punished without anyone looking at the bigger picture and asking All participants felt that being able to attend sessions at their local carers' centre was the most important support they received. “It’s nice just to be able to talk to other people. A lot of time you come out and think ‘what am I worried about? It’s hard but he has it a lot worse than me’. There’s always somebody worse off than you” – Preston “A centre like this is a respite for me. When I meet these people, I know I’m not alone….slowly we become friends….a centre like this is pivotal for the carers to come in and talk” – Preston "I think one of the most important things that you're asking about is the support from each other. You're not on your own" – Accrington Once they had accessed support at the carers' centres, most participants found out about other support available to them through the centre newsletter or through talking to other carers at the centre. However, while participants feel the carers' centres are vital for their support, a number of participants said that they felt attending the centres is not appropriate for all carers, for example, for carers that live in rural areas and would need to find someone to care for the person they care for in order for them to attend the carers' centre. "For people who [don't have extra support], how can they go and make use of these things? There's a big gap" – Garstang "You'll find as well that if you live like I do in [a rural area] the nearest centre is in [your nearest city]. A lot of the carers within our area won't travel...Nobody ever says 'we'll give you help towards looking after whoever it is and pay for a taxi'" – Accrington Participants also pointed out that not everyone would be interested in attending sessions at the carers' centres because of worries about having to talk about their situations in more detail than they would like or fear that they would then be 'hassled' by social services. Participants also felt that there is stigma attached to asking for help and that some people may be too proud to look for support. "Some carers may feel like you're prying on their ability to care for the person you're caring for...we hear it time and time again that 'are they looking at whether I'm capable of looking after that person'...especially with social services" – Accrington "I was speaking to my neighbour and saying 'you know, you're a carer'....he goes 'oh I'm not being bothered with all that and social services'" – Garstang "The cared for person thinks they're going to be taken away" – Accrington In one of the groups, participants felt that promoting the financial support to carers would be useful as, while people may not want the more emotional support that groups at carers' centres could provide, they may be more interested in practical support such as claiming carer’s allowance, accessing various discounts and so on. "Financial aid – that would draw people in wouldn't it? If you're going to have to give your job up you want to know what's out there for you" – Accrington A number of participants made the point that the carers' centres would need increased resources to adequately support extra carers that may try to access the centres on the back of this promotional campaign. "Will you be able to cope with all this influx if more people come?" – Accrington What does the carers centre offer and how does it help you? - It helps me get away for a few hours out of the house, to just give myself time to chill out and get my thoughts together. Also the residentials help me take a few days out, to stop stressing out and calm down before I go back home. Carers also gives me great opportunities to experience different things, like going to London and representing the carers, and new job experiences, like Co op,  when I worked there for the day. it's helped me a lot, especially with the adult care referrals, I didn't realise we were entitled to all that we have now. - This time two years ago I was alone, with no support and nothing to live for. The carers centre has changed my life in a million ways and I owe everything I have to them. They have the time and the care to sit with you and listen to you instead of a strict ’20 minutes only’ policy. Having support and guidance has been life changing for me and they are always looking for new ideas on how to make things better. They care about what we want and listen to our view and ideas. They give so many opportunities and I am so thankful they found me when they did! - They have helped a lot with my nan as she has been stressed and ill this helps me as my caring role is less. Participants felt it would be most useful to promote where carers could go to access information about support, for example encouraging them to contact their local carers' centre, rather than offering information alone and leaving the carers to it. A centralised centre with caring responsive staff is the most effective solution for the carers. “It needs concentrating where a carer can get at the information instead of a bit from there, a bit from there – it's bitty all over the place....need a hub of knowledge where you can go” – Garstang In order to also meet the needs of people who wouldn't be able to or interested in accessing support through a carers' centre, a number of participants also felt it would be useful to promote financial support available to carers. Participants felt that the campaign should make it clear to carers that they are entitled to support and to get in touch in order to access the support. Some participants felt it was important to include a website for information as well as an email address and telephone number as some people wouldn't want to take the step of making a call while others wouldn't have access to email. "[You] need a website – I wouldn't ring a number, commit myself to a telephone call" – Accrington A number of participants felt it would be useful to include a slip on any leaflets produced for people to provide their contact details and give permission for the carers' centres to contact them. With the carers UK and carers trust both creating new age specific social media for young and young adult carers they are responding to the need for tailored systems to communicate and provide feedback to the carers to allow those most isolated to be connected. By allowing a range of communication methods and flexibility, for those who are home bound or anxious in social settings and coupled with a support strategy or counselling could have the potential to attend further meetings in the future. "Maybe there should be a form, an acknowledgement slip or something, that if you know they're a carer you get them to sign to say it's ok for Carers Link or LCC to contact them. That breaks the barrier down of them having to come in [to the centre]" – Accrington In the Accrington group there was some discussion about how many hours a week you had to be caring for someone in order to be classed as a carer and be able to access support. This may be worth considering when deciding who the campaign is targeted at – is it just people who are doing a certain amount of caring? Other messages that participants felt it would be useful to get across in the campaign are: • That it doesn't matter if the person you look after is a family member, you are still a carer; • That the person you are caring for doesn't have to be living with you; • That you can be working and still be a carer; • That you don't have to wait until you are at breaking point to get support; and • That you are just as important as the person you care for. One group felt that it was important to make clear (generally, not just in a campaign) which organisations were providing funding for support. "That's another point – we don't actually know that it's Lancashire County Council that's doing them [funding/providing support]. We talk about the Time 4 Me fund and it's just the Time 4 Me fund. You'd look more favourably on social services if you knew that [LCC] were doing those things for you" – Accrington 3) What else could the carers centre do or provide to do make our service better? - I don't think there's anything you haven’t done, it's just the people that won’t listen to carers and they don’t understand what we do. - More support in schools and colleges (better understanding from schools etc) and more resources and we don’t have much for the young adults and young carers. Not much could be changed as they are quite frankly, heroes. - I think it has been a very good service and can’t think of anything at the moment apart from maybe more trips and time out from home. Participants felt that visual methods such as posters and leaflets should be used to promote the service. Using radio was also suggested, although it was pointed out that not all local stations covered the whole of the county and so a number of local stations should be used to make sure the message reached all districts. Locations suggested for posters and leaflets were GP surgery waiting rooms, pharmacies, dental surgery waiting rooms, supermarket notice boards, libraries, on bus shelters and on the sides or backs of buses. Participants also suggested advertising in local papers, particularly in the free papers that are distributed to all houses. “You’d either be taking the person you’re caring for to the doctors or going to the doctors yourself” – Preston "[They need to be] somewhere social which everybody uses at least once a week. Have big posters or leaflets in supermarkets" – Garstang If funding was allowed, participants felt that using television would be a good way of promoting the support available, perhaps using promotion on local news or making use of TVs in GP surgeries, post offices and pharmacies. It should be noted that other carers’ centres have produced promotional videos or documentaries featuring carers in the past to help with raising awareness and funding applications with positive results. "Television has brought awareness with this 'When I'm 65' series ...perhaps television’s your best medium" – Accrington Some participants also felt it would be useful to promote the support available to carers through the internet. Other ways of promoting support for carers that were suggested were through Help Direct and through the job centre as people may have had to give up work in order to provide care and so may be seeking information on benefits available to them. Some participants suggested that support for carers should also be promoted in schools and colleges to target young carers. "Another thing is schools and colleges because we have young carers. They sometimes carry that burden for years and years and years before they manage to speak up to say they are a carer for parents" – Accrington Comments from Flip Chart Activity (Focus group) The visual approach gave a unique informal approach to the discussion thereby providing for a rich variety of data and interpretation and the carers commented on how useful the session was after completion. The carers highlighted the need for specific awareness of their group especially within education, work, development and opportunities. Specific breaks and counselling support was identified as essential to the carers who included sharing experiences and peer support to assist wellbeing. Work and development was expanded upon as an a component of wellbeing and isolation and skills were identified as needed for preparing for work including a list of local employers and positions the young adult carers would ideally like to work for. This will lead into the awareness discussions with local employers and including the young adult carers in the process and engage them in challenging current working practice and support in work for carers. What Services are missing in Centre: Bullying Services, Peer Support Groups, Safe places to go (indoor and outdoor), Quick drop in centre for worries, helplines about medical conditions and support with money worries? What More Could we do, and what doesn’t work (Carers Centre): Branch out to schools more, a new building just for the Young Carers Team, more clubs and meetings. What Services do we provide, and how do they help?: Volunteering opportunities, confidence building and life changing, making new friends and meeting new people, 1-2-1 sessions, Theatre trip to see Wicked and Shopping in Manchester, Friday and Wednesday groups – time to get out of the house and have time to ourselves, builds our confidence up, help and advice, enjoyed the fireworks trip, speak to new people and feel welcomed, London trip – made new friends had time off my caring role and build up my confidence, time out of our caring role, 1-2-1s and trips help us to be stress free, using the Sandcastle pass gave us family time, trips – able to meet new people, Free advice, opportunities and support, peer support and friendship, understanding and other information, opportunities with ‘Carers Trust’ and Parliament, 1-2-1 helped me with bullying and help with my mental health and my mum, trips to universities, job opportunities (I now work for the carers centre). Consultation with NEET group (In connection with Take Action and Support project) ‘What will the Residential include? (Must be team building related, must help NEETS e.g. CV building: Strategy games, tower building, CV writing, Impartial Career advice, designated Key Worker, Preparing for Interviews e.g. what is appropriate, Trust exercises like falling and catching + blind folding and guidance, climbing with support of team members, orienteering and treasure hunt, manual handling, over the wall, planning our own activities to give ownership, first aid training, life guarding, social media training like how it can affect career raft building, duke of Edinburgh course, telephone skills, interview prep, sign language course, volunteer course, application form writing, raft building and racing, self-esteem building, confidence building, what does a job or college give you e.g. social aspect and friends and increases self-esteem, compare JSA and other benefits with wages received from paid employment. Even though the carers centre has a registered database of hundreds of local young adult carers there are many who are disengaged and this was specifically discussed in terms of how to target isolated carers and to ask those attending what can be offered in follow up sessions after the initial contact of the carers centre staff in helping support the carers and compliance. What Should Follow up Sessions include? Support relating to caring role available for YACs when working or at college, positive look at being a carer and the skills you acquire like maturity time management and coping in difficult situations, 1-2-1 action plan and support, in-depth and on going guidance and support, sharing experiences with caring, peer support and sharing experiences re jobs/careers, stress management. This intriguing exercise allowed a pictorial approach to difficulties faced by the young adult carers and allowed them complete autonomy over the exercise, which took the form of a spider diagram allowing for group involvement and discussion. As highlighted in the individual interviews on wellbeing and isolation, there were recurring themes including financial impact, lack of communication and negative social influences such as bullying and anxiety about public perception. Barrier Wall Exercise (YACs wrote down their Barriers on Bricks and created a wall): Money, Law, Confidence, Bullies, Rules, Anxiety, disabilities including mental physical and learning, family, regulations, lack of money, time, transport, lack of communication, negative people The session regarding work involved ideal employers and ideal jobs which sparked a positive focus on the activity, proving to be transformative and most instructive on contextualising their dreams and therefore where support is needed in work recognition of carers, which included qualities and skills the carers believed were most valued by employers. Group session about employers – YACs asked who their ideal worldwide employer would be, who their ideal Blackpool employer would be and what their dream job would be. Blackpool Employer: NHS (Harbour – new mental health hospital), Starbucks, Tache (Barwork), Sandcastle, TVR, Blackpool Council. Worldwide: Childs Play ltd, Spotify or Google, Disney Land, Carlso Bakery (USA), Hairdresser, Disney Cruise Ship. Dream Job: Mental Health Nursing, Mental Health Psychologist or counsellor, hair and beauty, childcare, children, social worker, bakery industry, ice cream maker at notoriannis, engineer, test race driver YAC Discussion about their skills and qualities employers may look for: Skills: Socializing, reading, photography, cooking, timekeeping, hardworking, team work, listening, good communication, typing skills. Qualities employers may look for: Punctual, presentable, respectful, polite, presentable, open minded, personality, honesty, acceptance, independent  6.0 Phase 3 – Self-report questionnaires and statistical analysis The CWS-2 61 Item Questionnaire remained unaltered after the four month consultation with the carers who had full access to the questionnaire in word document, written and through online completion. It was also introduced in the group discussion at one carers centre to prompt further discussion. The young adult carers remained satisfied that it discussed their opinions properly and the qualitative open questions offered valuable and rich information regarding how to improve local support agencies and national agenda change in line with the research approach. The 49 item Likert questions and the 12 item background information and qualitative questions were offered through secure email in Microsoft Word format or online through survey software called Lime survey. The carers agreed that a questionnaire leading from the interviews and focus groups allowed for the best mixed methods representation of their opinions on the topic areas which will be utilised in future consultations and made available freely to the carers and organisations involved immediately after publication to the University with consent. Response rates and respondent characteristics The completed CWS-v2 questionnaires were returned by 181 young adult carers of people suffering from a mental health problem or disability (16% response rate). This included online carers’ forums and the local carers centre’involved in the interviews and focus groups. Table 11. Sex of Participants Frequency Percent Valid Percent Cumulative Percent Valid male 61 33.7 33.7 33.7 female 120 66.3 66.3 100.0 Total 181 100.0 100.0 Psychometric Tests and Criteria Reliability - internal consistency. Both scales showed high internal consistency (Table 12 + 13). All item-total correlations exceeded 0.40 (Table 4) Table 12. Case Processing Summary N % Cases Valid 181 100.0 Excludeda 0 .0 Total 181 100.0 a. Listwise deletion based on all variables in the procedure. Table 13. Reliability Statistics Cronbach's Alpha Cronbach's Alpha Based on Standardized Items N of Items .949 .954 49 Table 14. Item Statistics Mean Std. Deviation N Time to yourself (A1) 4.2431 1.07317 181 Own needs ahead (A2) 4.0773 1.21316 181 Not able to take a break (A3) 4.2099 .87567 181 Not able to plan for future (A4) 3.4917 1.36471 181 Not able to continue caring (A5) 4.2652 .93473 181 Strains person care for (A6) 4.3812 .95072 181 Too dependent now (A7) 4.3094 1.08698 181 Too dependent in future (A8) 3.8287 1.07933 181 Saying things upset you (A9) 3.3867 1.36000 181 Irritable (A10) 3.5304 1.37656 181 Breaking point (A11) 3.9448 1.05264 181 Strains family and friends (A12) 3.7845 1.30511 181 Drifting apart (A13) 3.8950 1.12301 181 Isolated and lonely (A14) 4.0939 1.01490 181 Not getting support (A15) 4.0497 1.11692 181 Own financial situation (A16) 4.1271 1.11574 181 Financial person care for (A17) 4.1547 1.10973 181 Extra costs (A18) 4.0331 1.26447 181 Own physical health (A19) 3.9337 1.16238 181 Caring make health worse (A20) 3.9945 1.09796 181 Constant anxiety (A21) 4.0552 1.16773 181 Depressed (A22) 4.0552 1.21894 181 Nothing positive (A23) 4.1326 1.27108 181 Lack of sleep worry (A24) 2.6575 1.46584 181 Lack of sleep kept awake (A25) 2.2486 1.49036 181 So exhausted can't function (A26) 4.3039 1.07571 181 Being treated differently (A27) 3.1215 1.49318 181 Accidentally at risk (A28) 4.5691 .74680 181 Aggressive or threatening (A29) 4.1381 1.27268 181 Harming selves (A30) 4.0552 1.05264 181 Dangerous situations (A31) 3.9006 1.08579 181 Relapsing (A32) 4.3260 .95965 181 Enough info on condition (B1) 4.1215 1.20491 181 Enough info condition develop (B2) 4.3094 1.12219 181 Can get info needed (B3) 4.1602 1.04974 181 Easy to understand (B4) 3.9503 1.03964 181 Amount of advice (B5) 4.1105 1.06924 181 Clear who to go to (B6) 3.7790 1.24980 181 Clear in an emergency (B7) 4.1050 1.12301 181 Clear routine enquiry (B8) 3.9006 1.17428 181 Involvement important decisions (B9) 3.8840 1.09180 181 Influence decisions (B10) 4.3149 .96911 181 Easy to get help person care for (B11) 4.1050 1.21336 181 Easy to get help for self (B12) 4.3149 1.11816 181 Quality of help person care for (B13) 4.1713 1.03733 181 Relationships key staff (B14) 3.9669 1.02686 181 Staff communicating (B15) 4.1105 1.06924 181 How seriously staff take what you say (B16) 3.7790 1.24980 181 Level of understanding staff (B17) 4.0994 1.12104 181 Table 15. Item-Total Statistics Scale Mean if Item Deleted Scale Variance if Item Deleted Corrected Item-Total Correlation Squared Multiple Correlation Cronbach's Alpha if Item Deleted Time to yourself (A1) 190.2376 881.171 .710 . .947 Own needs ahead (A2) 190.4033 886.186 .553 . .948 Not able to take a break (A3) 190.2707 902.665 .459 . .949 Not able to plan for future (A4) 190.9890 887.011 .476 . .949 Not able to continue caring (A5) 190.2155 899.814 .480 . .949 Strains person care for (A6) 190.0994 893.868 .577 . .948 Too dependent now (A7) 190.1713 891.287 .541 . .948 Too dependent in future (A8) 190.6519 907.806 .286 . .950 Saying things upset you (A9) 191.0939 898.741 .331 . .950 Irritable (A10) 190.9503 890.914 .423 . .949 Breaking point (A11) 190.5359 895.006 .500 . .948 Strains family and friends (A12) 190.6961 868.546 .745 . .947 Drifting apart (A13) 190.5856 887.266 .584 . .948 Isolated and lonely (A14) 190.3867 914.894 .190 . .950 Not getting support (A15) 190.4309 909.724 .247 . .950 Own financial situation (A16) 190.3536 907.063 .287 . .950 Financial person care for (A17) 190.3260 877.076 .750 . .947 Extra costs (A18) 190.4475 873.538 .702 . .947 Own physical health (A19) 190.5470 878.805 .688 . .947 Caring make health worse (A20) 190.4862 878.496 .736 . .947 Constant anxiety (A21) 190.4254 874.279 .752 . .947 Depressed (A22) 190.4254 874.646 .714 . .947 Nothing positive (A23) 190.3481 874.606 .683 . .947 Lack of sleep worry (A24) 191.8232 977.835 -.572 . .956 Lack of sleep kept awake (A25) 192.2320 967.090 -.450 . .955 So exhausted can't function (A26) 190.1768 894.602 .495 . .949 Being treated differently (A27) 191.3591 899.498 .289 . .950 Accidentally at risk (A28) 189.9116 902.892 .538 . .949 Aggressive or threatening (A29) 190.3425 880.704 .599 . .948 Harming selves (A30) 190.4254 887.424 .623 . .948 Dangerous situations (A31) 190.5801 888.956 .578 . .948 Relapsing (A32) 190.1547 895.898 .536 . .948 Enough info on condition (B1) 190.3591 877.920 .675 . .947 Enough info condition develop (B2) 190.1713 877.921 .728 . .947 Can get info needed (B3) 190.3204 887.141 .629 . .948 Easy to understand (B4) 190.5304 893.806 .526 . .948 Amount of advice (B5) 190.3702 879.434 .741 . .947 Clear who to go to (B6) 190.7017 875.810 .679 . .947 Clear in an emergency (B7) 190.3757 883.669 .639 . .948 Clear routine enquiry (B8) 190.5801 883.356 .614 . .948 Involvement important decisions (B9) 190.5967 887.220 .602 . .948 Influence decisions (B10) 190.1657 894.617 .552 . .948 Easy to get help person care for (B11) 190.3757 875.658 .703 . .947 Easy to get help for self (B12) 190.1657 877.828 .732 . .947 Quality of help person care for (B13) 190.3094 887.082 .638 . .948 Relationships key staff (B14) 190.5138 893.129 .544 . .948 Staff communicating (B15) 190.3702 879.434 .741 . .947 How seriously staff take what you say (B16) 190.7017 875.810 .679 . .947 Level of understanding staff (B17) 190.3812 883.215 .647 . .948 Table 16. Intraclass Correlation Coefficient Intraclass Correlationa 95% Confidence Interval F Test with True Value 0 Lower Bound Upper Bound Value df1 df2 Sig Single Measures .277b .237 .325 19.768 180 8640 .000 Average Measures .949c .938 .959 19.768 180 8640 .000 Two-way mixed effects model where people effects are random and measures effects are fixed. a. Type C intraclass correlation coefficients using a consistency definition-the between-measure variance is excluded from the denominator variance. b. The estimator is the same, whether the interaction effect is present or not. c. This estimate is computed assuming the interaction effect is absent, because it is not estimable otherwise. ‘Following internal consistency analysis, cronbach’s alpha for the 49 item scale was .95, 96% CI [.94, .96]. Alpha is significantly above 0.7 (p>.001). Factoral analysis Table 17 and scree plot below displays the full spread of Eigenvalues. Table 14 below indicates that Factor analysis showed a total of ten components across all 49 items, which are further highlighted in figure 1. Screen plot output showing that the twelve components are above the Eigenvalue of 1 to be of consequence for further analysis. Table 15. Shows through Rotated component comparison how the 40 items load onto the identified ten components. Results of factor analysis and item convergent/discriminant analyses support both scales Table 17. Total Variance Explained Component Initial Eigenvalues Extraction Sums of Squared Loadings Rotation Sums of Squared Loadings Total % of Variance Cumulative % Total % of Variance Cumulative % Total % of Variance Cumulative % 1 18.668 38.097 38.097 18.668 38.097 38.097 7.881 16.084 16.084 2 4.101 8.369 46.466 4.101 8.369 46.466 5.246 10.707 26.791 3 3.145 6.417 52.883 3.145 6.417 52.883 4.756 9.706 36.497 4 2.661 5.432 58.315 2.661 5.432 58.315 4.228 8.629 45.126 5 2.302 4.698 63.013 2.302 4.698 63.013 3.414 6.968 52.094 6 2.129 4.346 67.358 2.129 4.346 67.358 2.809 5.734 57.828 7 1.654 3.376 70.735 1.654 3.376 70.735 2.764 5.642 63.469 8 1.571 3.207 73.941 1.571 3.207 73.941 2.613 5.334 68.803 9 1.358 2.772 76.714 1.358 2.772 76.714 2.176 4.442 73.244 10 1.117 2.279 78.992 1.117 2.279 78.992 1.899 3.875 77.119 11 1.092 2.229 81.222 1.092 2.229 81.222 1.681 3.430 80.549 12 1.021 2.084 83.306 1.021 2.084 83.306 1.351 2.757 83.306 13 .964 1.968 85.274 14 .879 1.794 87.068 15 .747 1.525 88.593 16 .647 1.321 89.914 17 .603 1.230 91.143 18 .496 1.012 92.155 19 .437 .891 93.046 20 .413 .842 93.888 21 .390 .795 94.683 22 .325 .663 95.346 23 .280 .571 95.917 24 .265 .540 96.457 25 .236 .482 96.940 26 .209 .426 97.365 27 .186 .380 97.745 28 .170 .347 98.092 29 .165 .337 98.428 30 .144 .293 98.721 31 .121 .247 98.968 32 .106 .217 99.185 33 .081 .166 99.351 34 .078 .160 99.511 35 .062 .126 99.638 36 .045 .092 99.730 37 .033 .068 99.797 38 .033 .067 99.864 39 .025 .052 99.916 40 .014 .029 99.945 41 .013 .026 99.972 42 .011 .022 99.994 43 .003 .006 100.000 44 2.543E-15 5.189E-15 100.000 45 1.305E-15 2.664E-15 100.000 46 1.076E-15 2.195E-15 100.000 47 5.374E-17 1.097E-16 100.000 48 1.991E-17 4.063E-17 100.000 49 -6.821E-16 -1.392E-15 100.000 etetertExtraction Method: Principal Component Analysis. Table 18. Descriptive Statistics Mean Std. Deviation Analysis N Missing N WELLBEINGTOTAL 125.2983 18.29722 181 0 SUPPORTTOTAL 69.1823 13.57469 181 0 Table 19. Descriptive Statistics N Range Minimum Maximum Sum Mean Std. Deviation Variance Skewness Kurtosis Statistic Statistic Statistic Statistic Statistic Statistic Std. Error Statistic Statistic Statistic Std. Error Statistic Std. Error WELLBEINGTOTAL 181 103.00 51.00 154.00 22679.00 125.2983 1.36002 18.29722 334.788 -1.280 .181 3.505 .359 SUPPORTTOTAL 181 68.00 17.00 85.00 12522.00 69.1823 1.00900 13.57469 184.272 -1.399 .181 2.748 .359 Valid N (listwise) 181 Floor and ceiling effects and skew were all acceptable, and the IEQ showed good internal consistency (Cronbach’s alpha=0.95) Discriminant validity. Both Well-Being and Support scales showed good discriminant validity with respect to being uncorrelated with age (Table 22). However, both scales interacted to suggest higher well-being and satisfaction with support (Table 23). Psychometric Tests and Criteria Reliability - internal consistency. Both scales showed high internal consistency (Table 12 + 13). All item-total correlations exceeded 0.40 (Table 4)  7.0 Discussion 7.1. Let us review the aims and objectives of this project The aims and objectives of this study are grounded in the theory presented by Treasure et al (2007) in the carers coping model and the MG Cherry et al (2013) carers Psychological model, and in reference to prior research specific to young adult carers 18-25 (Deardon and Becker, 2004; Becker and Becker, 2008; Becker et al 2013; Abraham and Aldridge, 2010). INSERT A LINKING SENTENCE Investigate the focus in recent years which have highlighted the problems faced by young carers and specifically the emerging adult young carers (18-25) (Becker and Becker, 2008) which indicated that their needs were not being supported. Continue the thematic evidence from prior studies which show that caring roles may result in positive and negative outcomes regarding wellbeing, mental health and also their social inclusion/exclusion as a result of their caring (Kornblum & Anderson, 1985; Segal & Simkins, 1993; Pakenham, 2005b; Pakenham et al, 2007). Report the barriers present to young carers mental health/wellbeing and how they may be overcome and theoretical driven research possible for the future (Action for Young Carers, 2005; Barnardos, 2007). Include mixed methodology with action research to highlight health outcomes for young adult carers relating to mental health/wellbeing and isolation. To pursue a collaborative research methodology to involve the carers in all three stages to raise their profile and in turn awareness nationally and national agenda/policy The aim of the qualitative study was to focus specifically on the young adult carers aged 16-25 as they were shown to be unrepresented in prior research as a group and to investigate through mixed methodology through interviews, focus groups and questionnaires to highlight mental health, wellbeing and isolation as a result of caring. The carers responded with great enthusiasm and motivation to the research area with certain carers participating in all three stages for a more longitudinal collection. The carers voiced their concerns that although they provide an essential and life-changing service they are still unrecognised at a local, national and employment level. Most reported serious issues in accessing programs and support schemes by the government and local support partners, which impacted on their mental health, well-being and social interaction and engagement. Further emphasis was placed on the need for recognising a national campaign of awareness and call on psychological and sociological bodies to continue the limited research in this field specifically on the young and adult carers to break the stereotyping of carers being older persons who care for a physical disabled individual. Enhancing interdisciplinary work not only increases the potential of researchers to investigate and support carers but also enables more coordinated practice to assure support in communities. It is essential to develop a more comprehensive framework or to combine existing frameworks to achieve effective collaboration particularly in relation to support for young adult carers. The existing care models should receive more in-depth evaluation in terms of how they work and what impact they have on multidisciplinary teams to inform future policymaking. The first stages involving the interviews were an invaluable experience and highlighted the positive changes, which the carers identified with and drew upon as caring adult individuals OR young adult carers. Referring back to the Treasure et al coping model (2007) combined with the MG Cherry et al (2013) carers Psychological model allowed the relation between caring impacts, illness and the many sociological, personal and individual dimensions which a young adult carer faces on a daily basis. This interaction with the themes highlighted, could lead to more complex theoretical frameworks for carers in the future and considers the qualitative nature of their opinions on coping with the caring role. This contribution to a developing framework is hoping to stimulate debate of the need for true collaboration and consultation with carers in producing effective theories to assist in future service led interventions and support at community and national level. Figure 15. Model of carer coping combination of treasure et al coping model (2007) and MG Cherry et al carers model (2013) COPYRIGHT The beginning of the literature review related to becoming a carer and identity of a carer which was identified by the carers’ 'unwillingness to accept sick role' which was a critical component of the carer identity transition, relating to stress and anxiety until after the true carers duties had been recognised and understood. Carers’ psychological resources which link with the stress, anxiety and depression component links with the role strain suffered as aspects of the care relationship as the caring role is identified as demanding by the carers themselves in the interviews, focus group and indeed the questionnaire. The stigma faced by the carers links well with the social and cultural factors as carers even if isolated are part of the cultural awareness and recognition of their role which includes the support and ability to access that support which links with the attributions about the illness component. The carers’ role was often identified as having constantly changing needs and demands with uncertainty and strain ingrained in their lives. Needs of the carers’ which had not been met may include financial, emotional, psychological and biological support often directly impacted on their mental health and wellbeing and could potentially lead to their isolation. Solutions and support have to satisfy the full needs of the carers including a full understanding of their role demand and aspects of the care relationship which will be discussed in the next section which focuses on the need to be multi-dimensional and inter-policy through strategic partnerships. 7.2 The need to engage partner organisations and collaboration Commissioning solutions that influence the determinants of the carers health, needs the active involvement of a wide range of partners, such as local authorities, other NHS organisations, voluntary sector organisations, the charity and national government education providers. There will be existing partnerships which can be accessed, for example the Local Area Strategic Partnership, or themed partnerships such as Health and Social Care Partnerships, Children and Young People’s Partnerships, Older People’s Partnerships but ultimately the most important are the carers and cared for persons themselves as informed experts on their own treatment and support. The young carers‟ projects were viewed positively by the young adult carers. They reported in the interviews and focus groups that this was one of the few settings where young carers consider their problems and experiences to be valued, understood and recognised (Thomas et al,2003; Becker et al, 2002; Shah & Hatton, 1999) and they also reported that they would like more shared care, respite care, more counselling and emotional support (Banks et al, 2002; Jones et al, 2004; Shah & Hatton, 1999). Themes arising from the support offered by social services were often seen as intrusive and of limited value (Jones et al, 2004; Eley, 2004; Banks et al, 2002; Dearden & Becker, 2000; Shah & Hatton, 1999). They also indicated that support services did not communicate or collaborate effectively with each other with the result that services for the young adult carers were not provided completely. Many interviews also indicated that young adult carers often felt that professionals had limited understanding of their expertise and account information they provided (Aldridge, 2003; Dearden & Becker, 1998; Tatum & Tucker, 1998; Shah & Hatton, 1999; Frank et al, 1998). This impacted on some of the isolation experienced by the young adult carers and effected their wellbeing and mental health. 7.3 The benefits of the social/cultural level At present, much commissioning is being carried out to promote health and well-being is focused on helping individual people to make informed choices about their health. By commissioning at population levels, we are likely to be able to achieve greater value for money, and harness the considerable resources the community itself has to offer and to engage and empower the carers rather than dictating through policy or top-down mechanisms. The carers highlighted the need for an acceptance group and close group circle of friends they felt comfortable with sharing their problems or story when needed. The social interaction was integral to their own wellbeing and mental health when dealing with serious cultural impacts such as stigma, dealing with support services. Cultural factors were common in the themes surrounding isolation in the interviews and focus groups specifically responded in relation to how the carers were perceived in many areas of life experience for example work, education, social interaction and peer influence and awareness. Many suggested the need to change public perception to allow specifically, young and young adult carers to identify more readily with an image of a typical carer more suited to their cultural background. They also discussed how many interventions or support systems fail because they do not recognise the communities or cultures they are a part of and therefore do not consider the impact of accessing these interventions and how social environment can help or hinder the young adult carers. Furthermore, they reported the need for social breaks and flexibility to allow relationships and life commitments to flourish are vital, these often suffered when the carer role was especially demanding and there was a lack of support especially in social environments such as university, college, school and work. In their experience, the carers reported a lack of awareness and understanding of the changing nature of their duties and recommended a national awareness of young and young adult carers especially to change public and policy attitudes. In the literature review there was a new emerging partnership being researched through intergenerational collaboration called youth-adult partnerships. ‘The whole reason most of us are here… is to promote that idea that what we've been through is just as beneficial to teach others, because we've been there, we've felt it, and I think that you the people who have a degree play just as important a role because of different reasons, and they're both pretty much equal. [Youth leader]’ (Ramey et al, 2015) In their findings, Ramney describes that in establishing a partnership role for youth beyond that of a client and enabled and empowered the young adult clients to learn specific skills from the adult partners which allowed more engagement in the community through dealing with other youth directly to raise mental health awareness and by working with other agencies and partners were able to learn structural outcomes. Within the carers trust UK there are a number of young adult champions designed to assist with the local carers centre for a 12 month period and be actively involved with their age group but there exists the possibility of utilising these new intergenerational partnerships to build the youth as active champions in their own communities. The need to champion the young adult carers as effective practitioners and advocates is essential to allow the cultural level to benefit from their experience and perspectives as carers. The key is targeting and segmentation Blanket solutions are ineffective, wasteful of resources and do not tackle health inequalities (Scottish Government, 2014; Welsh Government, 2011). We need targeted approaches focused on specific population groups. The individual and population approaches come together through the use of segmentation, focus group research and online information gathering, all social marketing techniques that commission bespoke services matched to specific needs. Getting people to identify themselves as a carer is important in gaining access to support available. Most participants on reflection didn't immediately see themselves as a carer, which often took many years of discovery and experience from other carers which then lead to looking for support, because they felt that looking after their loved ones was just part of being a family. There was concern that there is a stigma for some people in accessing support for carers for a number of reasons: Participants felt that some people are too proud to ask for support, are afraid that they will have to reveal a lot of personal information, or think that asking for support will mean they then have to involve social services for example. • Participants found out about the support available to them as carers through a number of sources. Several participants had seen leaflets or posters for their local carers' centre, and a couple of participants said they had been contacted directly by their local carers' centre. Many participants found out about support available through word of mouth. • Participants felt that finding information about support available to carers is currently difficult and participants' knowledge of the support available, even though they are in contact with the carers' centres, was not good in all cases. • Participants pointed out that, as carers, they come into contact with a number of professionals, for example GPs and social workers, who would be ideally placed to signpost carers to support. Most participants found that the professionals were focused only on the cared for person and didn't make the link to offer support for the carers. • Participants agreed that sessions where they could get together with other carers at the carers' centres are very important to them with some saying it is the most important support they receive. • Once participants had accessed the carers' centres, they then got further information about support available to them through, for example, the centre newsletter or through talking to other carers. • A number of participants noted that extra resource may be needed to support any extra carers that this campaign identified. • Participants felt that the campaign should help people identify themselves as carers by, for example, listing the sort of activities that carers may do for the person they care for or the sorts of issues that the cared for person may have. Participants felt the campaign would be most useful if it directed people to a central hub of information about the support available for carers. • Participants suggested using local radio and television if possible, as well as posters and leaflets for the campaign. They felt that visual materials should be placed where many people are likely to go on a regular basis, for example supermarkets or GPs surgeries. • A number of participants suggested promoting the campaign through schools and colleges to target young carers. • Participants pointed out that the word 'carer' can be confusing as some people think it refers only to paid carers. Some participants suggested that using the terms 'support' or 'look after' rather than 'care for' or 'carer' would help to avoid this confusion. Involving carers as informed partners At a national level, both Carers Trust and Carers UK are members of the Health and Care Voluntary Sector Strategic Partner Programme, which is funded to work strategically with the Department of Health, NHS England and Public Health, the key areas of their work in the last couple of years have included the development of legislation on care and support and associated regulations and statutory guidance. Their work programme in 2014-15 is focussed on preparing for the implementation of the Care Act, the Carers Quest initiative, bringing together the evidence base on health inequalities facing carers and developing local capacity for carer engagement in health and care. As part of their work, they will develop toolkits and other resources to help carers understand local health and care structures and the new legislation; will also explore how carers are being involved in work on integration of health and care, including integration pioneer sites. At a local level health and wellbeing boards, clinical commissioning groups and local authorities have important roles to play in looking at the needs of the whole community through Joint Strategic Needs Assessment and joint health and wellbeing strategies. Many areas have developed their own local carers’ strategies involving carers as strategic partners and have begun to refresh them in anticipation of the changes that both the Care Act and the Children and Families Act will bring from 2015, expectations and clear strategies are needed for what carers can expect from health and social care, Jobcentre Plus and the local voluntary sectors in the local community. Involving carers as informed partners in in general community health promotion has been linked to enhanced youth development and greater social integration in the community (Ward, & Green, 2003). Furthermore, youth participation in activism organizations has been shown to be related to higher levels of leadership, decision-making and community involvement. This has also been demonstrated in the carers’ reporting of their involvement and activity within the carers organisations in promoting their own wellbeing and promotion within communities. Social exclusion & hidden young carers It is generally agreed that official statistics of young caring do not include all young adult carers and of those identified only a very small proportion are assessed for support. There are many reasons that have been suggested for young carers not being identified, including blurred boundaries between adults and children’s services, lack of awareness of their own entitlements, reluctance to seek formal help and not viewing themselves as carers. Also, young adult carers caring for parents with mental health problems often remain hidden for fear of stigma or protection procedures being invoked. In practice, it is likely that they also provide more care as packages of care have been inflexible, inconsistent and fragmented. The young adult carers viewed positively the carers centres themselves but were more varied on their opinion of the NHS, social services and financial services. The carers centres were often discussed as the only setting where they can discuss their problems and experiences in safety and receptively. (Thomas et al, 2003; Becker et al, 2002; Shah & Hatton, 1999). By asking the carers in the interviews and focus groups they reported that they would like more shared care, respite care and more counselling and emotional support (Banks et al, 2002; Jones et al, 2004; Shah & Hatton, 1999). Support from social services and national agency was viewed often as intrusive and of limited value (Jones et al, 2004; Eley, 2004; Banks et al, 2002; Dearden & Becker, 2000; Shah & Hatton, 1999). The services which were discussed as not communicating or collaborating effectively with the carers led to service disuse, withdrawal and impacted on their isolation. Also highlighted in the interviews was the consensus that professionals had little understanding of what was happening in the family and ignored or did not take into account information they provided and did not consider their opinion. (Aldridge, 2003; Dearden & Becker, 1998; Frank et al, 1998). Given the amount of hidden young adult carers not identifying with the carers description or definition which is constantly changing with policy and agenda change, the carers reported often refusing to seek help or support for fear of labelling, anxiety or being isolated from normal social functioning. In education, the young adult carers often felt stigmatised at school, college or university by both teachers and their peers (Underdown, 2002) and a lack of understanding from institutions and staff about their circumstances, e.g., the changing nature of the role and its immediate impact on availability and additional needs of work. Work settings were found to be lacking in understanding and adaption to the carers needs and demands, many often not being offered positions after disclosing their caring duties as reported in the interviews this demonstrating excluded as a group they still feel. Despite the range of services available to carers over 16 years of age, including respite care, specific services such as counselling and emotional support, support with caring and household tasks, training, information and advice; there lacks a serious transitional period of support and often reaching the age of 16 whereby many support services cease and many carers withdraw or are not made aware of these additional services which are generally tailored to adult carers. Caring was also described by the carers’ as being a natural part of their family duty or commitment and awareness of the term carer is still lacking awareness in institutions and local communities which often leads to health professionals being unaware or overlooking potential clients. To have a working connection with the target group and gatekeepers it was essential that the regional approach to recruitment for the study which compensated for the poor response to the questionnaire distribution. The interviews and focus groups were viewed more favourably especially when full details of the questions and topic areas were discussed with the carers and gatekeeper staff at the carers’ centres. Allowing the questionnaire to be answered online through lime survey and through secure email via a MS Word document included flexibility that was received well by the young adult carers isolated or unsure of their identity as a carer. This was highlighted in the qualitative questions added at the end of the questionnaire after the initial 49 item Likert questions on wellbeing, mental health and support. In discussion with the gatekeepers and the young adult carers the study was fully discussed and encouraged to be considered for their full involvement on the process. Welfare Reforms and financial impacts From the literature review and three stages of the study, financial security and concerns are deeply ingrained with the carers’ Psychological wellbeing. Many carers reported stress, anxiety and depression as a result of the uncertainty of work, education and access to financial support such as PIP, Jobseekers and carers allowance especially after the welfare reforms and eligibility of constantly changing definitions and assessments. These assessments were described as being unaware of the condition and unable to take the carers’ experience and expertise into consideration when informing structural policy when considering caring roles. In 2013/2014 the UK government announced that there would be a 20% cut to the funding available for DLA/PIP which could affect hundreds of thousands of families. Carers UK recommended the following points to be considered on the financial burden of carers even before the welfare reforms: ‘Our research consistently shows that heavy-end carers are financially worse-off as a result of caring: • 74% were struggling to pay essential utility bills • Over half were cutting back on food to make ends meet (52%) • 66% were using their own income to pay for care for the person they cared for • 54% were in debt as a result of caring’ (Adapted from Carers UK, 2013) The removal or reduction of DLA/PIP could be devastating for families, particularly those who face the loss of two earned incomes because of illness and giving up work to care. This would push many into debt and financial hardship and would make family care financially untenable for others; with serious cost implications for NHS and social care services. In the following section we will consider recommendations for future policy relating to the financial wellbeing of carers. Impacts of caring The carers clearly identified the gender bias and perception in public perception of carers and it was also demonstrated in this study and the dissertation level pilot when female carers immediately responded more favourably. Themes in the identification of females perceived as being more caring, more readily identified with caring which also related to their young caring experience of siblings when in some families, one girl took on the majority of caring tasks, even though her brothers and father was present and in a position to help. Indeed, one such young carer was clear that she felt her brothers did not carry a fair share of the caring burden. The gender influence would be more pronounced in minority cultures. The males who took part in the study performed the full range of caring tasks and most were also primary carers. Another important finding, is that caring in and of itself is significant. The literature on caring has shown both the positive and negative impacts of caring (Morrow, 2005; Grant et al, 2008). The interviews in this study show that young adult carers’ wellbeing was affected in a variety ways by caring, there was a great deal of discussion concerning the care need, but all the interviews highlighted the negative impacts, especially feeling overwhelmed and their mental health suffering but they all reported the positive changes in their personality and the unique experience of caring being achieved. This experience, is immediately shared by others caring also and therefore understanding the unique story and journey they undertake. Although it is important not to exaggerate the negative impacts of caring, it may be the case that some young carers are asked to do too much, too young. In such cases, there is a legitimate fear of ‘over-functioning’. The vast majority of young adult carers in the study reported feeling ‘more mature’ than their friends of the same age. In some cases, it was simply the case that the young carers had a finely developed moral sense and was more independent, autonomous, self-reliant and confident. Many reported being more sensitive, considerate and understanding which has led to some carers pursuing new life goals and careers where possible, in line with their positive gains from carers. Triangulation influence on outcomes The mixed methods triangulation approach for this study was considered at the initial dissertation pilot stage but was unable to achieve given the word length and was re-formatted for PhD level. This allowed a multi-stage approach and involved philosophical and technical challenges to ensure each stage appropriately investigated the carers’ perspective on the key aims. The PhD proposal was given greater scrutiny because of the triangulation approach and had to justify each stage and reason for the qualitative and quantitative methods and considerable time and energy was invested. This caution and investigation could lead to less use of mixed methods in the realm of PhD study especially in Psychology (Morse, 2005; Bishop, 2015); and enhanced awareness and recognition of the benefits for students and participants would be key across the discipline. The reason often for mixed methods is to address key overlap in data or interpretation which may be evident in literature or philosophical searches of key studies and all support and advice given to ensure mixed methods continue to be a legitimate approach is crucial. More publications and discussions into triangulation especially would be helpful including conferences and international collaboration which this paper has hopefully contributed towards. The multi-stage orienting framework for this triangulation mixed methods study is based on creating a more just and democratic society that permeates the entire research process, from the problem to the conclusions and the use of results (Mertens, 2009). Ideally, studies draw upon one or more theoretical frameworks from the social, behavioural, or cultural sciences to inform all phases of the study and allow for greater integration of a variety of theoretical perspectives. Data limitations Although there has been much research activity surrounding young carers, the caring they undertake and its effects since the 1990s, it is acknowledged that there are still data gaps that need to be plugged (Becker, 2005). For example, there is a limited range of routine data collected, the dataset of small scale studies is often incomplete (only young adult carers accessing projects) and there are few longitudinal studies. The three stages cannot claim to capture everything there is to know about the experiences of young adult carers in the North-West UK, particularly since there are many influencing factors, which may not been identified for the experiences of these young carers. However, it seeks to draw attention to a number of important variables in the experiences of young adult carers and also illustrate the differences of young adult carers wellbeing, mental health and isolation. By combining the methodology to allow the rich data and voice of the carers to be paramount and for them to be involved in the research process, it could be criticized from more mainstream quantitative research departments. The level of interviews and focus groups were sufficient for avoiding saturation and loss of data due to the word count, the quantitative numbers could certainly be developed in future research given the limited response and catchment of 200 questionnaires returned. Mental health/wellbeing of young adult carers The carers provided for a wealth of information and discussion on the nature of their views on mental health and well-being and how best to support and implement interventions. There are considerable limitations in the data that are available, however it has been suggested that the extent and type of caring does not predict how the health and well-being of a carer may be affected (SCIE, 2005). It is also difficult to disentangle the impact of caring from the other socio and economic influences. Mental and emotional health issues associated with caring by young people have been well reported (SCIE, 2005); these issues include anxiety, depression, stress and low self-esteem. Anxiety is particularly associated with concerns about their financial and long term welfare, when they feel support is insufficient or inaccessible. The carers who care for a person with mental health problems were especially at risk and at need of additional support and advice which was lacking at school, education, work and in local health forums. Mental health was reported as being viewed negatively as a society with labels and stigma being attached to those needing mental health support or caring for a person with mental health needs. This directly influenced the wellbeing of the young adult carers and was linked to feeling recognised and valued as informed individuals in the health process and in consultations on policy change. Whereas in the UK the term ‘mental health’ has often taken on negative connotations, the National Institute for Health and Clinical Excellence (NICE) guidance for employers draws upon a positive view of mental wellbeing as ‘a dynamic state in which the individual is able to develop their potential, work productively and creatively, build strong and positive relationships with others and contribute to their community’. Mental wellbeing for carers will be determined by the interaction between the community, society support, and the individual” (Foresight report, 2008; NICE, 2009; Robinson et al, 2013). Robinson et al study (2013) on mental health promotion recommended supporting mental health communities through culture change and participatory approaches (Blaug et al., 2007) rather than a purely individual focus which seems timely, considering current policy emphasis on sustainable cost-effective approaches. The carers were specific about not being considered by a range of support and community services, which left them feeling isolated or overlooked by interventions or strategies which were often not reported or linked with assessments. The need for supporting the mental health and wellbeing of carers is well documented by research on mental health; People with higher levels of good mental health and wellbeing have better general health (NHS Information Centre, 2011), use health services less (Lyubomirsky et al, 2005a), live longer (Chida & Steptoe, 2008), have better educational outcomes (NICE, 2009a; NICE, 2009b), are more likely to undertake healthier lifestyles (Lyubomirsky et al, 2005a) including reduced smoking and harmful levels of drinking (Deacon et al, 2009), are more productive at work (NICE, 2009a; Boorman, 2009), have stronger social relationships (Pressman & Cohen, 2005; Lyubomirsky et al, 2005a; Dolan et al, 2006) and are more social (Centre for Mental Health, 2009). Higher levels of mental wellbeing are also associated with reduced levels of mental ill-health in adulthood (Lyubmirsky et al, 2005b; Keyes et al, 2010) which is essential for those carers caring for mental health needs as shown in the data. A key argument for promoting mental health and preventing mental illness is the evidence of effectiveness of interventions once mental illness has been diagnosed (RSPH, 2012; RSPH, 2013). By allowing a bottom-up approach with true collaboration with carers and key personnel, a more interdisciplinary and reflective holistic approach for young adult carers as a specific targeted group needing tailored support may emerge. Case example: Improving the health of disengaged young adult people According to NIACE consultation reports (2010,2011, 2013). Disenfranchised, out-of-school young people can have a range of health problems (smoking, alcohol and drug abuse, unintended pregnancy, sexually transmitted diseases, suicide, sexual and economic exploitation, eating disorders, violence, and poor life chances). Recommendations from the reports include the following points: 1. Address not only the behavioural issues of young adults themselves, but also environmental factors (social and economic conditions) and social norms that greatly influence behaviour. Young people’s immediate social needs must be met, and they may need much practical assistance regarding housing and money, and training in coping skills and interpersonal negotiation 2. Involve gatekeepers and stakeholders at the outset, i.e. key opinion-formers and community leaders 3. Involve young adults in all aspects of the interventions to enable their needs and wants to be well understood. More effective messages and materials to be designed, and greater insights to be gained into the contexts within which young people practice behaviours (social marketing techniques are invaluable here). The use of peer educators has been very successful. Involving young people directly provides ownership of the project by the target audience, generating a sense of the urgency and importance of the issues 4. Participatory approaches harness the creativity, energy and resourcefulness of young people and getting involved in itself promotes their health 5. Seek to influence parents and other social role models 6. Mobilise communities to provide alternative attractive places to go and things to do, including alcohol-free clubs, sports, crafts, music-making 7. Open up cultural, religious and societal dialogue about key adolescent health issues to shift community norms and provide opportunities for marginalised young people 8. Invest in support networks and training activities throughout the life of the project 9. Provide access to the necessary products and services to practice the behaviour change, e.g. condoms, counselling services, clean needles 10.Provide services that are confidential, with staff trained to deal with young people, convenient opening hours, accessible to transport etc. (Adapted from Open University K311, 2010) “The most effective projects are born out of important community alliances. They involve some combination of non-governmental organisations, health and education teams, individual youth, local clubs, sports organisations and other cultural groups. Any one sector or group could not possibly have reached a group of young people as dynamic and complex as those who are out-of-school. Only cross sector collaborations ensure that access is gained and impact can be achieved” (Referenced from International Union of Health Promotion and Education (2000). There are examples of interventions to improve mental health and wellbeing they can act at different levels – whether population, community or individual which the carers indicated in the interviews and focus groups in the need for assessing support and impact of awareness policies especially in mental wellbeing impact at individual, community and ideally structural level. We must act with policymakers to focus on the carers groups most at risk of poorer mental wellbeing, thus reducing health inequalities for themselves and therefore their cared for person which they remain a lifeline. We must aim to reduce the negative impacts on mental wellbeing of a policy, programme or service, and maximise the positive impacts by listening to the carers as key partners and ensuring continuing assessment and feedback at all levels by enhancing control; increasing resilience and community assets; and facilitating participation and promoting inclusion as well as the wider determinants of health (National MWIA Collaborative, 2011). These recommendations link in well with the Eight pillars model in the literature review which indicated potential integrated support for dementia carers proposed by the Scottish Government (2013) and previous carers’ assessments (NIACE, 2008, 2010, 2013; carers organisation, 2002, 2005, 2008, 2010, 2013, 2014). The World Health Organization (2005) states that, “some of the major determinants of mental health are located within social and economic domains and include: social inclusion and access to supportive social networks; stable and supportive family, social and community environments; access to a variety of activities; having a valued social position; physical and psychological security; opportunity for self-determination and control of one’s life; and access to meaningful employment, education, income and housing.” (p.92) which also suggests the need for community and strategic alliances to include carers as partners of care as shown in the Scottish policy change (2014). Policy implications Collaboration with Carers Trust and Carers UK through this research included consultations with the carers on policy changes. The manifesto (carers UK, 2014) in considering the policy changes from their perspectives on national government was highlighted in the literature review and will be presented again in this section. By comparing the results, discussions and manifesto it can offer another perspective on the outcomes of this action research in gaining positive changes for the carers.  Figure 16 Carers UK Manifesto (2014) COPYRIGHT COPYRIGHT COPYRIGHT Following the pressure on policy changes for carers the government has conducted national consultations indicated in the literature review and one strategic approach is the Carers Strategy: National Action Plan 2014 – 2016 (Department of Health, 2014) which includes a number of consultations with carers and partnerships 2015-2016; the researcher is involved in two to represent young adult carers perspectives which are underlined. Priority area 1: identification and recognition Publish regulations and guidance to support local authorities to carry out their responsibilities under the:  Care Act  Children and Families Act Department of Health, Department for Education - ongoing Work with local authorities to help them prepare for the implementation of the Care Act and the Children & Families Act, including developing practical guides and toolkits, assuring readiness and reviewing progress Department of Health, Department for Education - Implementation Commenced - April 2015 Work with the Health & Care Voluntary Sector Partner Programme to improve identification and involvement of carers Department of Health - Up to March 2015 Provide funding for the final year of the DH programme to test approaches to identification of carers by healthcare professionals, and disseminate learning from the programme to support future work Department of Health - Funding agreed for 2014-15 Learning from the programme to be disseminated in 2015-16 Encourage local partners to develop or refresh carers’ strategies that consider how the actions of different organisations can identify and support carers of all ages. Department of Health - ongoing Encourage the identification of carers as part of work to implement the vision set out in Transforming Primary Care Department of Health NHS England – ongoing Support NHS England in delivering its plans to improve identification and recognition of carers of all ages through delivery of its Commitment to Carers Department of Health NHS England - ongoing Priority area 2: realising and releasing potential Support The Children’s Society and Carers Trust to deliver a series of workshops for local managers and other professionals to deliver a ‘whole-family’ approach to assessment and support for young carers Department for Education – ongoing Set up a Task & Finish group to consider issues of particular relevance to young adult carers, and what further actions can be taken by national and local government and other partners to enable them to fulfil their education and employment potential Department of Health, Department for Business, Innovation and Skills - Task & Finish by summer 2015 Initiate a pilot scheme to explore ways in which local authorities and other local partners can support carers to maintain paid employment. Department of Health, Department for Work & Pensions - Government Equality Office - Final reports by autumn 2016 Priority area 3: a life alongside caring Explore the available evidence to assess the impact of caring roles on people’s broader circumstances Department of Health, Department for Work & Pensions - ongoing Work with the integration pioneer sites to consider how models for integrated health and social care can deliver better outcomes for carers Department of Health – ongoing Support local partners to make use of the opportunity presented by the Better Care Fund to develop shared approaches to identifying carers Department of Health - ongoing Priority area 4: supporting carers to stay healthy Support local partners to maintain a focus on breaks from caring through delivery of the Better Care Fund in 2015/16 Department of Health – Ongoing The research has engaged with consultations with the Department of Education and Department of Health in 2014 - 2015 to utilise the qualitative data at dissertation level and to emphasise the need for greater awareness and points rise in the literature review. The dissertation results and the PhD outline were received well in both department key personnel to include in considering the carers’ point of view interactive with strategic and national policy positioning. Both consultations lasted 3-6 months and involved inter departmental and charity engagement to allow varied perspectives on the discussions. By working as advocates for the carers in different fields and departments we can ideally help to strengthen key alliances and partnerships for their benefit in linking back with grass roots projects and empowered communities. In acting as a bridge between the organisations, communities and government agenda it is hoped to focus on what assets the community has which can be enhanced and capitalised on to bring about change (Douglas, 2010). It is important to note that many consultation data such as the Employers for Carers and Department of Health Task and Finish Group report (2014) suggested the impact of carers leaving employment and its recommendations, which remain to be implemented in the priority areas suggested. The carers trust provided a priority list in 2015 for the general election on 7th May for carers to highlight key areas in line with the priority area approach of the government consultation strategy. Carers Trust General Election issues for carers (2014) 1. Government needs to commit more funding to social care The social care system needs to be properly funded. Without more money, a system which is already in crisis will continue to worsen. The Care Act provides new rights for carers, however without extra money it will not be possible to implement. We want the political parties to guarantee they will prioritise funding for social care and recognise the need for services to be funded so that carers of all ages receive excellent care and support. 2. Give carers a break Breaks from caring, as well as other forms of support, can be a huge help to carers of all ages. It can make the difference between being able to carry on, and having to give up. If a carer cannot carry on, there will potentially be enormous care costs to the taxpayer. We want the political parties to commit to ensure that funding allocated to carers is spent on carers to allow carers to take a break. 3. No charging for carers. Carers play a vital role in society. The Government has identified them as the first line of prevention. The economic value of carers is £119billion each year. We believe it is false economy to charge carers for the support they need in order to care. We want the political parties to commit to ensure that carers are not charged for the support they need. 4. Carers of people with dementia must be properly supported There are 800,000 people with dementia in the UK and an estimated 670,000 family and friends acting as carers of people with dementia. Research by Carers Trust1 clearly identified the needs of carers of people with dementia and how health and social care services should be supporting and involving them. We want the political parties to commit to ensure that carers of people with dementia receive the best care and support and that their needs are better addressed in the health and care system. 5. Carers of people with mental health problems must be identified as key partners Carers play an essential role in helping and supporting friends and family who are users of mental health services. They are often the ones who identify what the person needs and are a vital partner in their care. However, carers are often excluded from the care planning and treatment of people with mental health problems and vital information is not shared. We want the political parties to commit to ensure that carers of people with mental health problems are identified as key partners and that their needs are also addressed. 6. Young carers must be identified and supported Up to 700,000 young carers in the UK provide valuable support to their families and friends. Without being identified and supported early, their caring role can damage their health, wellbeing and life opportunities. We want political parties to commit to ensure that young carers are identified and supported earlier in education, by GPs and health professionals and by children and adults social workers so that their needs and aspirations are addressed. 7. No cliff edge in support for young adult carers As young carers become young adults their caring responsibilities often increase. When life should be full of opportunity, young adult carers experience extra barriers to college, university, training and employment. 375,000 young adult carers aged 16 - 25 need greater support and recognition so that the care they give to others is not at the cost of their own future. We want political parties to commit to ensuring that young adult carers are recognised as a vulnerable group and prioritised in the financial support made available to schools, colleges and universities to access and sustain their education. 8. A duty on the NHS to identify carers The Care Act introduces new duties on Local Authorities to identify and support carers. We know that many carers first come into contact with primary care services and believe that the NHS has an important role to play in identifying carers. However, there is no duty for the NHS to do this currently. We want the next Government to ensure that the NHS has a responsibility in identifying carers and to ensure carers are referred to the support they need. 9. Quality care and support for all carers Carers depend on high quality care for the person with care needs so that they can take a break. For this, they need care workers who are well trained and supported, who know them and their needs and are paid appropriately for their time, not the cheapest rate possible. We want political parties to commit to ensuring that all carers can access the best quality care and support through high quality replacement care, via a well-trained and supported care workforce. 10. Health and Care Services need to be better co-ordinated to deliver for carers. Carers often have to navigate between complex health and social care systems and often report they have to tell their story many times. Carers need to be placed at the heart of changes to health and care in order to ensure fully joined up support for carers, rather than simply introducing more difficulties for them to navigate. We want political parties to commit to true co-ordination between health and social care so that services are responsive to carers needs. (Carers Trust, 2014)  8.0 Conclusion The young adult carers remain the best source of information regarding changes to themselves and their cared for persons’. Research and progress needs to be centred around the carers and their cared for persons and I would recommend the qualitative or mixed methods approach to ensure their voice is not lost in translation. There was exceptional support and engagement from the carers and online carers’ forums which proposes new avenues of research for future studies. Carers are facing serious un-necessary isolation, financial and emotional strain and there is a pressing need for further awareness and engagement in departments with carers being top priority. Repeating Kennan et al (2011) I will present this quotation 'For these reasons, it is widely reported that research on young carers must address the ‘invisibility’ of this population (Thomas et al. 2003). Previous empirical studies have established that much caring can be ‘covert’ (Banks et al. 2002) or ‘hidden’ (Gray et al. 2008; O’Connellet al. 2008)'. According to the Scottish and Welsh consultancies with carers, providing carers with information to support them in their caring role can improve outcomes for both them and the people they care for (2010, 2013, 2014). Carers need to know their rights and where to go for advice and support; they may need information about specific health conditions such as dementia, or how best to perform certain tasks; information to support their own health and well-being. Such information needs to be sensitive to the carer’s age, culture and family circumstances. Furthermore, it needs to be up-to-date, relevant and timely. National policy and strategies must have a dedicated department dealing with young carers and young adult carers specifically, relating to education, mental health and inclusion. Within the educational and social structures I would recommend staff development and training on carer-related issues as being fundamental to ensuring that information provision is mainstreamed into the day-to-day activities of NHS professionals and staff at all levels. Following this guidance issued to Local Health Boards, NHS Trusts and local authorities will require inter-organisational and inter-departmental cooperation to ensure the training needs of carers themselves. According to the Welsh Government consultation considered in the literature review, research undertaken on behalf of the Care Council for Wales in January and February 2012 identified widespread support for a core cluster of training and learning for carers that reflected the generic practical tasks of caring and dealing with the impact of the caring role’(Welsh Gov, 2010). The Welsh Government has made £5.8 million available over the three years 2012-13 to 2014-15 to support the development and implementation of the strategies which shows promise; but must remain checked and feedback included from carers at all levels to ensure it’s being utilised properly. This includes the seven Local Health Boards, Wales Ambulance Trust and Velindre NHS Trust, which are required to submit the final version of assessment of those local Strategies by 2015. Professionals of all levels must assist with longer term monitoring and evaluation of legislation regarding carers with Local Health Boards and their partner authorities have to develop frameworks to measure the impact the Strategies are having on carers’ lives. Support relating to caring role available for young adult carers is essential when working or at college which needs to include a positive consideration of being a carer and the skills you which could be shared through peer-mentoring, social breaks and drop in support. Action plans and ongoing guidance and support with sharing experiences with caring, peer support were identified as most valued by the carers which would contribute to effective skills support. The Carers Strategies (Wales) Regulations 2011 placed a duty upon Local Health Boards, NHS Trusts and local authorities within which Welsh Ministers have, however, stated that they will consider the need to extend the list of ‘designated authorities’ in future to include other agencies covering education and housing. As part of this the Social Services and Well-being (Wales) Bill will build on the Carers Strategies (Wales) Measure, and seek to reform the law relating to the care and support of people (adults and children) and the law relating to carers. Under the Bill, local authorities and Local Health Boards will be required to work together to improve the wellbeing of carers, as well as those they care for. The Bill will require local authorities and Local Health Boards to provide information, advice and assistance to help people (including carers) understand how the care system works, what services are available locally and how to access the care and support they need now and in the future. In certain cases, local authorities will also have to assist people (including carers) in assessing and securing the care and support identified. As from 1 April 2014, local authorities will have a discretionary power to support carers when the Social Care (Self-directed Support) (Scotland) Act 2013 comes into force. The local authority must carry out a carers assessment, consider the assessment and then decide whether the carer has needs in relation to the care provided to the cared for person. If the local authority decides that the carer has needs, the authority then has to consider whether the needs could be satisfied (wholly or partly) by the provision of support and decide whether to provide such support. The support is then provided to the carer by one of the four options for self-directed support set out in the legislation. Young carers are also eligible for support in similar fashion. As stated, the power is discretionary. It might be used in relation to existing carers who receive support and to some new carers. It might also be used to support carers in crisis or who are deemed to have critical or substantial needs. It might even be used to support carers on a preventative basis to help ensure that they can continue caring in good health and to have a life alongside caring. We envisage that the type of support provided directly to carers using this power would mostly be short breaks but could also include advocacy, help with the cost of transportation, driving lessons, leisure activities, counselling and anything that helps promote positive outcomes for carers. Other types of support such as information and advice would generally be provided universally in any event. Among the recommendations from the Scottish consultation there is a concluding point on important law and legislation change for young adult carers. They state when a young carer becomes an adult carer, as an adult carer he or she should have a Carers Support Plan.’ In order to get this Plan, adult carers need to have discussions with services about the support needed to enable them to carry on caring whilst being able to meet their own aspirations and achieve good personal outcomes. In order to ensure, therefore, that those young carers approaching the age of 18 who are likely to become adult carers receive a Carers Support Plan to determine any need for support. In doing so, we propose that young carers before they turn 18 years of age and will have a right to a Carers Support Plan irrespective of whether or not they are receiving children’s services. ‘(Scottish Government, 2014). Young adult carers are an under-estimated and growing group of informal carers, but with distinct needs. They are a minority group even within carers and their unique perspectives often including their young caring experience, which directly impacts their health and well-being and social inclusion. They remain hidden and unaware of their status until their discovery usually from another carer or carers centre. They have reported serious issues with accessing the assessments and support as they are recognised as adult carers upon reaching 16 years of age and there is little provision or specific transition to help with their development in arenas of work, education, health and wellbeing. This remains a systemic and policy failure at local, national and international arenas despite changes in government White Papers, which have typically aimed at adult carers’ health and social care services. Therefore, there needs to be greater understanding of the transition between adults and child’s caring needs, with policy and provision including tailored support. Specialist support, such as support for wellbeing, isolation or mental health concerns. For example, Cornwall used an element of their funding to fund places at treatment services to ensure families with young carers were able to access support for substance misuse; • Parenting support, such as emotional or practical support, or referring to a parenting course. • Practical support, such as support with undertaking daily chores. This is either delivered directly by the support worker, or a referral is made to adult social care; • Emotional support, such as referrals to counselling sessions; • Financial support, such as using funding to purchase necessary items; a review of family benefit entitlements and support in accessing the correct benefits or grants • Mediation work to strengthen relationships, such as conferencing or counselling According to the Carers UK (2011, 2013) The State of Caring Survey care and support sector is complex and fragmented. Many carers find that the care and support services they and their families need are inadequate, unaffordable, hard to access, and that information about them is difficult to find or navigate. One of the main reasons carers give for stopping working or reducing their hours is a lack of suitable practical support. Almost a third (31%) of working age carers responding to a 2011 survey had given up work to care or reduced their working hours because support services were not flexible enough, the person they care for did not qualify for support, there were no suitable services in their area, services were too expensive or services were not reliable enough. Care and support services are often perceived to be of poor quality, or are not shaped around the needs of the carer. This reflects the interviews and focus groups on employment support and educational support, which found that formal services were insufficient or non-existent when applied for beyond the description.  9.0 Recommendations There needs to be increased resources and support for young adult carers and their families, and to introduce awareness schemes; raise their status within policy change and consultations within national agency, support companies to force attention on specific needs of their mental health, wellbeing and social inclusion. By improving their visibility across adult health and social care services it is important to consider their needs as much as they place the needs of others first. Specific consideration should be paid in education and work awareness and the financial implications they suffer in terms of accessing carers’ allowance, ensuring young adult carers assessments are undertaken and that assessments lead to services and support, not only for themselves but also for the person needing care; thus reducing their level of caring responsibilities. Support and implementation should be monitored systematically and feedback provided to the carers thereby including them in development of tailored support schemes and recognising their expert opinions on caring itself. Negotiating an agreement of shared responsibility, behaviours and actions that are achievable and safe for both the young adult carers and the support professionals involved. When dealing with Government policy makers relating to purely financial considerations it is worth noting the consultation data and reports which provide a useful evidence for proposing tailored support beyond the insufficient structural approach currently used. For example, The Personal Social Services Research Unit (PSSRU) has estimated that the public expenditure costs of carers leaving employment is £1.3 billion per annum. Often the positive effects of dealing with these issues on Government spending are not estimated and approaches to the organisational culture are essential to provision and support. All relevant organisations should recognise the value of supporting people to combine work, education and care (Carers uk, 2013) Promoting and enabling flexible attraction policies to recruit carers Promoting and enabling flexible working to retain carers and support facilities to access such as carers’ breaks, special leave and mental health support. A national ID card system to recognise and offer immediate support and offers to carers relating to a local partner with a personal record which agencies could access to allow partnership recognition. Signposting employees to information on care and support services that enable them to combine work and care and diminish the chances of dropping out of the labour market at the onset of caring responsibilities. (Carers UK, 2013) Promoting the business benefits of supporting carers to government and business themselves. Awareness sessions and work placements with employers and educators to foster new partnerships and policies to support carers especially mental health and wellbeing to include both organisational and individual level of interventions. Promoting the benefits of self-employment to allow creativity and opportunity for carers through financial aid and specific support utilising their expertise as informed consultants. Recognition and support of carers across all educational areas and specific care plans in place for transition across ages and a flexible study practice to allow breaks and autonomy if needed. Research and support into the carers and mental health champions to include engagement in educational, social and employment settings. 9.1 What services and support are needed? The young adult carers identified in the interviews, focus groups and questionnaires highlight a lack of mental health understanding for ages above and below the age of 18, especially for the young carers with support not being transitional or targeted for carers. There exists a huge gap in services for well-being and mental health of all ages with many being ignored or unrecognised through the disease model of mental health unless according to the carers ‘you are at ‘crisis’ point or aren’t ‘mentally ill enough’ or ‘you’re on your own’. Effective resource centres or preventative education linked with support placements for mental health awareness including carers as facilitators would be useful and using their experience in mental-health assessments which currently create a culture of delay and administrative appraisal. There needs to be greater awareness for young people’s problems in schools and colleges, employment with opportunities to enable the growing needs and number of carers across all ages. A future solution based strategy needs to be implemented as soon as possible to deal with the growing need of the carers which will be well documented given the number of government consultations due to finish in 2016, information alone rarely changes behaviour and habit (Williams et al, 2013) but given a holistic and multi-approach team and collaboration with the carers we can hope to ensure that all parties are included on building a fair and resilient and robust tailored support system which matches the needs of the carers. One of the most useful forms of support in the communities and societies of the North-West were the Carers centres which were quoted as ‘having the time and the care to sit with you and listen to you instead of a strict ’20 minutes only’ policy.’ The carers reported needing support and guidance on what they want and for professionals and staff to listen to our view and ideas. Carers’ feedback and assessments on support services need to be regular and acted upon immediately to be responsive to their ever changing needs and demands from local services. Figure 17 Supporting Working Carers Final Report (Carers UK, 2014) Welfare Reform Recommendations (Carers UK, 2013) It is critical that a full evaluation of the impact on carers is conducted as a matter of urgency. This should include an estimate of the number of carers expected to lose Carer’s allowance, a disability impact assessment and a carer equality impact assessment which looks at the impact on gender equality of the likely loss of Carer’s Allowance through cuts to the DLA/PIP budget, given that the majority of Carer’s Allowance claimants are women. Introduce an earnings taper for Carer’s Allowance, to replace the existing £100 earnings limit. The current cliff-edge limit means that carers able to juggle work and care actually lose their entire benefit if they earn over £100. The earnings limit provides considerable is incentive to work and traps carers in low paid jobs. For those working in professional occupations, this amounts to just several hours of work a week. This prevents carers from keeping in touch with the workplace and skills, or from supplementing low-level benefits. Lift the 21 hour study rule for Carer’s Allowance, which prevents carers from engaging in education or training alongside caring if they are considered to be spending 21 hours a more on study. Carers UK’s Adviceline has frequently hear from carers who wish to gain new skills through studying alongside caring, but are unable to do so because their only independent income would be taken away as they lose the right to Carer’s Allowance. Simplify the entitlement to carers’ state pension allowing for breaks in caring duty and recognising the demand of caring being a full-time job. For example, caring responsibilities for 35-hours a week for someone with a qualifying disability benefit. Regarding Universal Credit System, it is vital that robust procedures are put in place to identify carers early in the Universal Credit application process and that carers are not drawn into other strands of conditionality. For example, single parents face relatively tough conditionality and there is a risk that a single parent who cares for a disabled child would face sanctions if they are initially grouped with lone parent rather carers.??? For example, Carer’s Allowance claimants and carers in receipt of an additional amount for caring responsibilities within Universal Credit should be exempt from the household benefits cap. 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Available at: http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf List of Tables Table 1 Summary of findings from Young adult carers’ education report Table 2 Carers Organisation Health impact Evidence findings Table 3 NIACE Assessment consultation Table 4 Negative effects of young caring on health determinants Table 5 Positive effects of young caring on health determinants Table 6 Caring tasks and responsibilities of young carers Table 7 Summary of research Methodology Table 8 The research design Table 9 Participants Table Table 10 Primary carers: length of time providing care Table 11 Sex of Participants Table 12 Case Processing Table 13 Reliability Statistics Table 14 Item Statistics Table 15 Item-Total Statistics Table 16 Intraclass Correlation Coefficient Table 17 Total Variance Explained Table 18 Descriptive Statistics Table 19 Descriptive Statistics 12 166