Young Carers

Findings from Suzanie Adina MAT SAAT’s PhD research at Loughborough University that explored the experiences of Malay children whose parent has cancer and their information needs and behaviour to cope with the challenges they faced as dependent children and care-givers.

This exploratory study considers young carers’ perceptions of fac- tors contributing to their adjustment and benefit finding within their caregiving role. Benefit-finding, defined as the “process of deriving positive growth from adversity”, is a key construct within the domain of positive psychology. A strengths-based perspective was adopted with young carers, informed by resilience theory and positive psychology whereby protective factors associated with adjustment were explored. A mixed methods design was utilised encompassing a preliminary qualitative phase and a sequential quantitative phase. A Focus Group in Phase 1 explored factors perceived by educationally achieving young carers as supporting them to adjust. Phase 2 continued the exploration of the adjust- ment factors within a survey design for a population of young carers. Significant relationships were identified between self- efficacy, social support and school connectedness and young carer adjustment. Key methodological considerations are addressed and the theoretical and practical implications of these findings are discussed.

Caregiving is usually associated with adults’ responsibilities. Official statistics and research have demonstrated, however, that many children and young people in the global North and South have substantial, regular caring responsibilities for family members with chronic illnesses, impairments or other care needs. This chapter conceptualises children’s roles as ‘caregivers’ and the care work they do. It then analyses the available evidence on outcomes of children’s caregiving and the factors and processes influencing their involvement. While research reveals that caregiving may have positive as well as negative outcomes for children’s well-being, formal and informal safety nets are needed, especially in resource-limited settings, to alleviate children’s care work. Children’s and families’ experiences suggest that social protection measures and support for those being cared for as well as those providing care would help to ensure that caregiving does not have long-term negative impacts on children’s personal development, education, health, family relations, peer interactions, social participation, employment opportunities and socially expected transitions to adulthood.

This paper explores the causes and effects of a unique begging style involving children as guides in Dodoma Municipality, Tanzania. The rationale for Dodoma Municipality to be the study location is that the begging phenomenon using children as guides is rampant. The study sample involved 40 respondents, of whom 6 were young carers of visually impaired adult beggars, 6 visually impaired adult beggars, 6 young carers of visually impaired adult beggars' family members and 22 influential community members. Purposeful sampling technique was used to obtain these respondents. Data collection methods entailed interviews and observations. Artifacts were also used to portray issues under investigation more vividly. The data were analyzed using content analysis in which themes and sub-themes were determined by organization, reduction and interpretation of the information collected. The study discovered that lack of education, sympathy attraction, lack of proper orientation, laziness and poverty were the major causes for the existence of begging involving children as guides. The study revealed that minor causes include parents' negligence and alcoholism, Single Parenthood as well as drought and hunger. The begging style using children as guides resulted into notable limited basic education access among these vulnerable children hence a liability and not asset. The study recommends that young carers of visually impaired adult beggars should be enrolled to basic education and revitalize education for self-reliance.

Projet de soutien aux jeunes dont un parent est atteint d’un trouble de santé mentale : 
Synthèse de la consultation auprès d’adultes ayant grandis lors de leur enfance/adolescence avec un parent aux prises avec un ou des problème(s) de santé mentale.
Stage doctoral effectué à La lueur de l’espoir du Bas-Saint-Laurent, été 2018.

In many Sub-Saharan African countries, the care of chronically ill, disabled or elderly relatives is usually regarded as the responsibility of family members, within a broader landscape of often overburdened healthcare systems, the expense of medical fees, very limited access to social protection and policies that emphasise home-based care. Recent studies have demonstrated that children and youth, particularly girls and young women, take on considerable caring roles for chronically ill and elderly relatives in Africa. This article reviews the available research on young people"s caring roles and responsibilities within families affected by chronic illness and disability in Sub-Saharan Africa. I discuss how children"s caring roles challenge global and local constructions of childhood and suggest ways of conceptualising the socio-spatial and embodied dimensions of children"s everyday care work within diverse household forms. I analyse evidence on outcomes of care and children"s resilience in managing their caring responsibilities and examine the complex array of processes that influence whether children take on caring roles within the family. I argue that relational, intergenerational and lifecourse approaches to researching children"s caring responsibilities within the family have considerable potential for future geographical research and could provide further insights into the ways that care is embedded in social relations,

Ebony was at school when her mother Rebecca's best friend called in a panic. She was in hospital and had been injured at work. Rebecca, a professional chef, was near the end of her day and cleaning a metal grease trap when " Bang. Done. Her back was gone. " Years of hard labour working a kitchen had taken its toll. It was the last day Rebecca worked and the first day Ebony became a full time carer.

This story is an insight into the life of young carers, the processes and tribulations they are faced with when looking after a member of their family and the lack of support they receive in spite of the National Disability Insurance Scheme. These amazing individuals exceed any expectations of a 'normal' teenager though are unfairly deemed invisible as they are pushed into the outskirts of the city and simply forgotten.

This chapter provides insight into young people’s caring relations and transitions within what is often considered a particularly ‘troubling’ familial context in both the global North and South: living with HIV.  I analyse the findings from two qualitative studies of young people’s caring roles in families affected by HIV in the UK, Tanzania and Uganda from the perspective of feminist ethics of care, emotion work and lifecourse transitions.

In this paper we respond to the question: How can we gain a better understanding of our own values and where they come from, and how this has influenced our work together and in our interests in improving outcomes for carers? We evidence our claims to knowledge in responding to this question in the areas of: • shared values and how we came to them; • our learning through writing this paper; • our ability to give to hope to others. In analysing our claims, we find areas of mutuality that we had not predicted. We subsequently analyse further to understand our relational dynamics and we introduce our readers to our living-theory of mutuality that emerges. This account provides guidance for a way of writing a collaborative paper that enables both authors' voices to be of equal value, recognising both the unique and the shared perspectives as a result of our shared methodological approach. Through the process of writing a dual-authored paper we show how our mutuality develops as an explanatory principle and a living standard of judgement (Laidlaw, 1996).

Recent research and policy have recognised the central role of unpaid care-givers (often women and girls) in the global South. Disability rights perspectives, however, challenge the language of ‘care’ and ‘dependence’. Drawing on qualitative research with women living with HIV and children caring for them in Tanzania, and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. Despite the development of interdependent caring relations, both care-givers and people living with HIV in Tanzania experience ‘diminished autonomy’. The participation of people living with HIV, including disabled people, in home-based care and in peer support groups, however, can enhance ‘relational autonomy’ for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and cross-movement advocacy by disabled people, people living with HIV and care-givers.

This paper explores the impacts of the HIV/AIDS epidemic on children and families in northern Tanzania using the concept of social resilience. 1 The study is based on the findings of childfocused research with street children and children and families from HIV/AIDS-affected households. The paper illustrates the coping strategies that children and young people, and parents and caregivers adopt at the household level. In particular, it examines how the burden of care affects different generations of women and highlights their resilience, together with the importance of social networks and the fluidity of movement between rural and urban areas. The research suggests that migrating to urban areas to seek a living in the informal sector represents a survival strategy adopted by some children and young people orphaned by AIDS when their families and communities are unable or unwilling to support them. The paper concludes by exploring parents', caregivers', children's, and young people's views on the forms of social support that would promote their resilience and thereby help to mitigate the impacts of the epidemic at the household level.

PhD young adult carers thesis
Report Title: Mixed Method study to investigate young adult carers (Aged 16-25) mental health, wellbeing and social isolation in the North-West of England.

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 showed 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 modeland 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.

This article explores care as an inequality-creating phenomenon pertaining to the position of young female carers. Engaging the normative theory of Nancy Fraser on ‘participatory parity’ as a framework for equality, an intersectional analysis of childcare practices of young female carers reveals inequalities that cut across class and gender, and given the focus on young carers, age is incorporated as a third social category. The experiences of sibling care practices of older daughters are explored in the familialist institutional and cultural setting of Istanbul, where the gendered identity of the young carer is constructed, and the childhood participation is shaped in relation to the care work. Driving on the empirical study conducted in Istanbul, the article aims to build the link between the normative theory of equality and intersectional analysis of care family care practices of young female carers. The article argues that care emerges as an inequality-creating phenomenon that cuts across not just gender and class but also age in cases where the participatory parity is hindered.

Theme Focusing on young carers, one of the most marginalised groups in Europe, this international event will explore youth led-solutions to unemployment with the ultimate objective of bringing barriers down and informing international policy and practice. Bringing together policy makers, practitioners, young people, researchers, academics and employers, the conference will present cutting edge research and debate youth-led initiatives in the UK and other European countries that can contribute to reforms required to better support young people into work, training and further education. The conference is organised in the framework of Erasmus (KA2) and will draw from the research findings of the 2-year youth-led project Care2Work that explored the needs, challenges and opportunities of young BME carers in their transition to responsible adulthood and their fair access to employment, education and training. Call for Abstracts The conference will host a series of parallel workshops delivered by international experts and young people. A call for abstracts has been announced and we welcome proposals for paper presentations, case studies, workshops or interactive sessions. Employers and employing services are also encouraged to present innovative models and practices that promote diversity at the work place and equal opportunities for young people. If you wish to present your work please submit an abstract (200 words) to contact@iars.org.uk by 31st March 2017. Bursaries of up to 200 euros are available for international participants. Registration To secure your place, CPD Certification and lunch, we are requesting a donation of £35 via Big Give. To register please click here.

This paper investigates the time-space practices of young people caring for their siblings in youth-headed households affected by AIDS in Tanzania and Uganda. Based on qualitative exploratory research with young people heading households, their siblings, NGO workers and community members, the article develops the notion of sibling 'caringscapes' to analyse young people's everyday practices and caring pathways through time and space. Participatory time-use data reveals that older siblings of both genders regularly undertake substantial caring tasks at the very high end of the caregiving continuum. Drawing on rhythmanalysis, the paper explores how young people negotiate emotional geographies and temporalities of caring. The competing rhythms of bodies, schooling, work and seasonal agricultural production can result in 'arrhythmia' and time scarcity, which has detrimental effects on young people's health, education, future employment prospects and mobility. Young people's lifecourse transitions are shaped to a large extent by their caring responsibilities, resulting in some young people remaining in a liminal position for considerable periods, unable to make 'successful' transitions to adulthood. Despite structural constraints, however, young people are able to exercise some autonomy over their caring pathways and lifecourse transitions. The research sheds light on the ways that individuals embody the practices, routines and rhythms of everyday life and exercise agency within highly restricted broader landscapes of care.

Caring for a loved one has been reported as potentially being a very stressful experience and can have negative consequences on carers’ wellbeing. However, research also demonstrates individual differences in the ways that carers respond to their caring responsibilities. In particular, certain factors and practices have been identified that promote carers’ resilience and thus reduce the negative impacts of stressful caring experiences. Furthermore, evidence exists to suggest that carers may not simply cope, but thrive in their role. Drawing on individual narratives and findings from broader research studies, this paper presents an argument whereby carers’ experiences exist along a continuum, from adversity to prosperity. In doing so, individual experiences exemplify how resilience may be interpreted across personal caring contexts and thus provide a platform for identifying and developing supportive practices.

African childrepn who care for sick or dying adults are receiving less than optimal support due to confusion about whether or not young caregiving constitutes a form of child labour and the tendency of the authorities to play it 'safe' and side with more abolitionist approaches to children's work, avoiding engagement with support strategies that could be seen as support of child labour. To challenge this view, and move from policy paralysis to action, we present a study from Western Kenya that explores community perceptions of children's work and caregiving as well as opportunities for support. The study draws on 17 community group conversations and 10 individual interviews, involving 283 members of a Luo community in the Bondo District of western Kenya. We provide a detailed account of how integral children's work is to household survival in the context of poverty, HIV and AIDS as well as community recommendations on how they and external service providers can work together in supporting children faced with excessive caregiving and income generation responsibilities. We use our findings to call for less restrictive regulations of children's work and to develop a plan for policy and action for young carers that identifies key actors, their roles and responsibilities, and how they might best collaborate-in a way that is sensitive both to concerns about child labour, as well as community strengths, resources and apprehensions about the stigmatisation of children targeted by agencies.

This paper presents the findings of a study exploring the perspectives of community agencies in Edmonton, Alberta on issues related to young carers (young people who are primary caregivers to a family member or friend who is ill, disabled, or has other conditions needing care or support). Four themes emerged from the qualitative research: lack or awareness and recognition of young carers; language and terminology used to label young carers; lack of community support; and the need for policy development relevant to young carers. The study draws attention to a group of young people who remain hidden and unrecognized in Canadian society.

Residing on an empirical study carried out in Istanbul with young female carers (daughters who share the care responsibility of their younger siblings with their mothers), this article explores the care provider positioning of a child by contemplating the dilemma of empowerment/vulnerability in relation to generational order and relational agency of the child. The care responsibility within the course of childhood locates a particular intergenerational experience. Understanding this experience from the standpoint of children contributes to the conceptualisation of childhood as a contested, yet relational space of interdependencies along the generational order. The study demonstrates that sharing the caring responsibility of a family member brings both empowerment and vulnerability for young carers that is negotiated within the entangled boundaries of the childhood and adulthood. The emerging themes pertaining to the empowering features of caring duties are solidarity between the mother and older daughter being/feeling capable of doing things without being supervised by an adult whereas the emerging themes pertaining to vulnerability are physical and emotional (anxiety) burdens of caring for younger sibling and the difficulty older daughter's have in balancing their own needs against their siblings' needs. The narratives of young female carers reveal the solidaristic as well as the conflicting features of the intergenerational relations (childhood in relation to adulthood) along the lines of empowerment and vulnerability that problematizes the interdependencies and agency of the child within the generational order.

This is the ebook brining together four national reports that were produced as part of the C2W programme. The reports were produced by the project partners and were written in native languages focusing on the UK, Sweden, Italy and Greece. A dedicated website has been set up to disseminate these reports and all C2W outputs (http://www.care2work.org/)
The C2W project is inspired and motivated by the priorities of the EU Youth Strategy. In 2009, the general director of the direction of education and culture of the European Commission said: “The Council of Ministers Responsible for Youth in the 27 member states of the EU adopted a resolution endorsing a new EU Strategy for Youth. This strategy, which is based on a proposal by the EC made in April of the same year, will guide both the EU institutions and the member states in pursuing policies to improve the lives of all young people in the coming decade (Quintin, 2009). Six years later and we are yet to witness noticeable changes in member states’ youth policies and institutional structures. Although there has been a lot of effort and investments from European institutions to orientate in favour of youth policies, these seem to remain weak at national level across Europe. Programmes such as Youth in Action and Erasmus have tried to designate priorities and to organise decision in a compressive manner. Nevertheless national youth policies remain fragmented and poorly funded while the youth sector seems to be in competition with its self and weaker than never (Gavrielides, 2013).

Putting this challenge in the context of a research, policy and practice area that has traditionally been under the radar, our partnership was faced with serious challenges. From the outset, we were clear that in order to achieve our objectives we had to work in collaboration with the youth and care sectors. The goal of C2W became clear and that was to bring together young people and professionals to establish a cross-sector, transnational strategic partnership in order to design and implement innovative practices and come up with a set of accredited, reference documents that will: (a) empower young BME carers, and (b) increase the capacity of service providers, notably in the areas of integration, equity and inclusion, and discrimination.

While many academics are sceptical about the 'impact agenda', it may offer the potential to re-value feminist and participatory approaches to the co-production of knowledge. Drawing on my experiences of developing a UK Research Excellence Framework (REF) impact case study based on research on young caregiving in the UK, Tanzania and Uganda, I explore the dilemmas and tensions of balancing an ethic of care and participatory praxis with research management demands to evidence 'impact' in the neoliberal academy. The participatory dissemination process enabled young people to identify their support needs, which translated into policy and practice recommendations and in turn, produced 'impact'. It also revealed a paradox of action-oriented research: this approach may bring greater emotional investment of the participants in the project in potentially negative as well as positive ways, resulting in disenchantment that the research did not lead to tangible outcomes at local level. Participatory praxis may also pose ethical dilemmas for researchers who have responsibilities to care for both 'proximate' and 'distant' others. The 'more than research' relationship I developed with practitioners was motivated by my ethic of care rather than by the demands of the audit culture. Furthermore, my research and the impacts cited emerged slowly and incrementally from a series of small grants in an unplanned, serendipitous way at different scales, which may be difficult to fit within institutional audits of 'impact'. Given the growing pressures on academics, it seems ever more important to embody an ethic of care in university settings, as well as in the 'field'. We need to join the call for 'slow scholarship' and advocate a re-valuing of feminist and participatory action research approaches, which may have most impact at local level, in order to achieve meaningful shifts in the impact agenda and more broadly, the academy.

Millions of children in sub-Saharan Africa undertake personal and medical care for family members who are unwell with AIDS. To date, no research has investigated whether such care provision places children at heightened risk for pulmonary tuberculosis. This study aimed to address this gap by identifying risk factors for pediatric pulmonary tuberculosis symptomatology. In 2009-2011, 6002 children aged 10-17 were surveyed using door-to-door household sampling of census enumeration areas. These were randomly sampled from six urban and rural sites with over 30% HIV prevalence, within South Africa's three highest tuberculosis burden provinces. Validated scales and clinical tuberculosis symptom checklists were modeled in multivariate logistic regressions, controlling for sociodemographic cofactors. Findings showed that, among children, severe pulmonary tuberculosis symptomatology was predicted by primary caregiver HIV/AIDS-illness (OR1.63 CI1.23-2.15 p<.001), and AIDS-orphanhood (OR1.44 CI1.04-2.00, p<.029). Threefold increases in severe tuberculosis symptoms were predicted by the child's exposure to body fluids through providing personal or medical care to an ill adult (OR3.12 CI1.96-4.95, p<.001). Symptoms were also predicted by socioeconomic factors of food insecurity (OR 1.52 CI1.15-2.02, p<.003) and household overcrowding (OR1.35 CI1.06-1.72, p<.017). Percentage probability of severe tuberculosis symptoms rose from 1.4% amongst least-exposed children, to 18.1% amongst those exposed to all above-stated risk factors, independent of biological relationship of primary caregiver-child and other sociodemographics. Amongst symptomatic children, 75% had never been tested for tuberculosis. These findings identify the risk of tuberculosis among children providing home medical care to their unwell caregivers, and suggest that there are gaps in the health system to screen and detect these cases of pediatric tuberculosis.