School of Health and Rehabilitation Sciences

The aim of this article is to describe the disability experienced by older people with hearing impairment using the framework provided by the World Health Organization's International Classification of Functioning, Disability and Health (ICF). The nature and prevalence of hearing impairment in the older population are outlined, along with the Activity Limitations and Participation Restrictions associated with such impairments, and the contextual factors that influence the disability. Appropriate assessments of hearing Impairments, Activity Limitations, and Participation Restrictions applicable in a rehabilitation context are also described. Hearing impairment leads to breakdowns in communication, a fact that suggests that the impairment is likely to influence frequent communication partners. It is argued here that the impact of the impairment on others is a so-called Third-Party Disability. Finally, an example of how the ICF can be applied in the rehabilitation of an older person with hearing disability is presented.

Purpose: Head and neck cancer (HNC) survivors may experience functional changes to their voice, speech, and hearing following curative chemoradiotherapy. However, few studies have explored the impact of living with such changes from the perspective of the HNC survivor and their carer. The current study employed a person-centered approach to explore the lived experience of communication changes following chemoradiotherapy treatment for HNC from the perspective of survivors and carers. Method: Participants included 14 survivors with non-glottic HNC and 9 of their carers. All participants took part in in-depth interviews where they were encouraged to describe their experiences of living with, and adjusting to, communication changes following treatment. Interviews were analysed as a single data set. Results: Four themes emerged including: (1) impairments in communication subsystems; (2) the challenges of communicating in everyday life; (3) broad ranging effects of communication changes; and (4) adaptations as a result of communication changes. Conclusion: These data confirm that communication changes following chemoradiotherapy have potentially negative psychosocial impacts on both the HNC survivor and their carer. Clinicians should consider the impact of communication changes on the life of the HNC survivor and their carer, and provide adequate and timely education and management to address the needs of this population.

The published literature addressing the nature of patient- and family-centred care (PFCC) among young adults (16-25 years old) living with chronic disease and their family members is diverse. The aim of this systematic review was to collect and interpretatively synthesise this literature to generate a conceptual understanding of PFCC in this age group. From an initial pool of 10,615 papers, 51 were systematically identified as relevant to the research question and appraised using the Critical Appraisal Skills Programme tools. A total of 24 papers passed the quality appraisal and proceeded to a qualitative meta-synthesis. The qualitative meta-synthesis revealed three major elements of PFCC relevant to young adults living with chronic disease and their family members: (1) patients and practitioners felt able to engage with each other on an emotional and social level; (2) patients and families felt empowered to be part of the care process; and (3) patients and families experienced care...

Completion of my PhD thesis has absolutely been a team accomplishment. I am so fortunate to have had the encouragement, support, and confidence of many people throughout my journey. I am incredibly grateful to each of you. First of all, I would like to express my deepest appreciation to my exceptional team of supervisors who have imparted inspirational passion for their research and a zest for life. Thank you, Nerina, my mentor for how to combine PhD studies and having babies, for your contagious can-do attitude and for sharing your expertise in all things third-party disability. Thank you, Linda, for listening, for connecting me with other helpers around the globe, and for keeping me mindful of the bigger picture. And to Tami, charged with the task of being my primary supervisor, thank you for providing meticulous feedback and careful direction in balance with warm personal encouragement throughout my PhD journey. I especially appreciate your teaching me to take a breath and take another look and, perhaps most significantly, for sticking with me through earthquakes, aftershocks, moves, pregnancies, and babies. The last four years sure have been full of adventure! I would like to acknowledge the statistical assistance of Dr. Chi-Wen Chien, who was never too busy to help with Rasch analysis. A big thank you to my translators, Sandra Wielaert, Martina Schaefer, Franziska Stuewe, and Elizabeth Gibson. Thank you also to Eleanor Barclay, Lucy Schumacher, and UC librarian Patrician Jordan for their help with the systematic reviews, Felicity Bright for sharing her expertise about hope, Associate Professor Barbara Grant for her methodological teachings, Associate Professor Pierre Pluye for advice regarding methodological v quality rating, and Professor Alan Tennant and Professor Brian O'Connor for their guidance in statistical analysis. My sincere appreciation goes out to all of the people with aphasia and their families for opening their homes and their hearts to share their stories of aphasia. Your participation made this research possible! I am indebted to many speech therapists and speech pathologists, in New Zealand and Australia, for participant referrals and help with data collection. I am particularly thankful to Freya Davison, Mary Cronin, Dr. Kyla Brown, Dr. Clare McCann, and The Aphasia Registry: Communication Disability Centre at the University of Queensland. I never would have made it to 100 (and beyond!) without you. Thank you to so many of the postgraduate students and staff at the University of Queensland and the University of Canterbury, especially the Creyke Road gang. Special thank you to my counterpart at the University of Auckland, (almost Doctor) Karen McLellan, for alternately listening with compassion, talking sense into me, and/or pacifying me with chocolate, as required. To my family and friends in all corners of the earth, thank you for your thoughts on the beta version of the SOS-Aphasia, for never being afraid to ask about how my PhD was coming along, and for cheering me on every step of the way. Thank you to my parents for their unrelenting belief in me, especially my Mum whose voice I can always hear in my head, saying "… think you can, or you think you can't… you are right." (Also thank you to Henry Ford for that one). I have been so lucky to have the two cutest research assistants ever. Finn, thank you for your enduring charm and good behaviour as we travelled over 5500 kilometres, from the bottom of the South Island to the top of the North Island, on our data collection missions. Summer, my mini Rasch expert, thank you for sleeping in vi the front pack while I type and cooing quietly during skype meetings (usually). Most of all, thank you both for keeping it all in perspective. I have reserved the jump-up thank you for my husband, best friend, and number one supporter. Jacek, thank you for doing this with me. Like so many things in our lives together, my PhD has been an adventure with ups and downs that have affected you as much as me, so much so that we have come to call its effects "thirdparty PhD". Thank you for all of your technical support: programming the website and the ICF generator, writing code for sorting the database search results, learning SPSS syntax and R then teaching them to me, making diagrams that look pretty and avatars that have transparent backgrounds; thank you for parenting while I presented at conferences and most weekends while I wrote; and, thank you for your financial support. Most of all, thank you for your unrelenting love and belief in me. You have always said that dreams are for doing and have backed it up each day with your actions. Thank You. ILU. Along with the funding provided by my generous, hard-working husband, I am appreciative of the financial contributions from a College of Science scholarship at the University of Canterbury, a scholarship from the Tavistock Trust for Aphasia, and a research grant from the New Zealand Speech-Language Therapists' Association.

The purpose of this study was to explore the impact of communication disorders on family members of people with Parkinson's disease (PD) through the lens of third-party disability. Nine community-dwelling family members who live with people with PD participated in semi-structured interviews. Data were collected and analyzed using the qualitative research methods from the tradition of phenomenology. Two themes emerged from the analysis of data. The first theme, "What?" captures examples of how communication between participants and their family members has changed because of PD, and how participants attempt to manage frequent communication breakdowns. Two subthemes address communication challenges related to changes in speech and changes in cognitive-linguistic skills, respectively, in their family members. The second theme, "It brings up things that have changed," addresses the broader life impact that the communication changes have had on participants. The first subtheme describes how participants are changing their roles to take on more communication-related responsibilities in their households while still trying to maintain the dignity of their family members. The second subtheme reveals how participants experience grief and loss in that the decline in communication between themselves and their family members brings about a loss of connection with the person they may be closest to and, hence, changes their relationship with that person. Family members experience third-party disability related to communication disorders in their family members with PD. Some of these experiences are similar to third-party disability experienced by family members of people with other types of communication disorders. Better understanding of the extent and nature of third-party disability would help clinicians address the communication needs of both their clients with PD and their family members.

Hearing impairment is the most common communication disability in older people. The wide-ranging impact of hearing impairment means that not only does the person with hearing impairment experience the consequences, but his or her frequent communication partners do also. In this article, the authors discuss the impact of hearing impairment in older people on spouses with normal hearing using the conceptualization of "third-party disability" created by members of the World Health Organization (WHO, 2001, p. 251). Results of a series of studies conducted by the authors demonstrate that spouses experience a range of activity limitations and participation restrictions due to their partner's hearing impairment, including a variety of stresses involving lifestyle changes, communication difficulties, and emotional consequences. In this article, the authors highlight the important role of family-centered intervention in audiologic rehabilitation for older adults and emphasize the need to increase inclusion of spouses and significant others in the rehabilitation process. Older people with hearing impairment experience a range of activity limitations and participation restrictions because of their hearing difficulties. People with hearing impairment often do not live alone; hence, their significant others also experience the effects of the loss. This is especially true when the significant other is the most frequent communication partner with the person who has hearing impairment, as is often the case in older couples. Although individuals with hearing impairment directly experience the hearing loss, significant others can experience participation restrictions and activity limitations in their interactions with their partner. In this article, we discuss the impact of hearing impairment in older people on spouses using the term third-party disability as defined by members of the World Health Organization (WHO, 2001, p. 251). Results of a series of studies conducted by the authors will be summarized and used to highlight the important role of family-centered intervention in rehabilitation of older adults with hearing impairment. Members of the WHO have increasingly acknowledged the effect of hearing impairment on spouses and other family members as a significant issue in the older population. They have labeled this phenomenon third-party disability, and identified it as an area for future research. Third-party disability refers to "the study of disability and functioning of family members due brought to you by CORE View metadata, citation and similar papers at core.ac.uk

Hearing impairment is the most common communication disability in older people. The wide-ranging impact of hearing impairment means that not only does the person with hearing impairment experience the consequences, but his or her frequent communication partners do also. In this article, the authors discuss the impact of hearing impairment in older people on spouses with normal hearing using the conceptualization of “third-party disability” created by members of the World Health Organization (WHO, 2001, p. 251). Results of a series of studies conducted by the authors demonstrate that spouses experience a range of activity limitations and participation restrictions due to their partner’s hearing impairment, including a variety of stresses involving lifestyle changes, communication difficulties, and emotional consequences. In this article, the authors highlight the important role of family-centered intervention in audiologic rehabilitation for older adults and emphasize the need to inc...

Family members are significantly affected by the consequences of hearing impairment and can potentially play an important role in a client's hearing rehabilitation. This paper uses two types of interaction analysis (Roter Interaction Analysis System (RIAS) and Conversation Analysis (CA)) to examine family member participation in a corpus of 17 video-recorded initial audiology appointments. RIAS results demonstrated that family members' primary active communication role in consultations involved information provision. The CA findings supported this, and additionally identified that when family members provided additional information, it was often in disaffiliation with clients' descriptions. In particular, disaffiliation arose concerning the extent of the client's hearing difficulties and the client's hearing rehabilitation needs. These 'disagreements' between clients and family members are analysed in detail, including how they were typically responded to by the audiologist. The implications of these disagreements are discussed in relation to family-centred care and effective rehabilitation in audiology.

Purpose The purpose of the study was to explore the perceptions of audiologists about the role of family members in hearing rehabilitation for older adults with hearing impairment (HI), the influence of family member involvement on outcomes, and factors affecting family members' involvement. Method A qualitative descriptive research study was undertaken. Using a purposeful sampling strategy, 9 audiologists were recruited. Audiologists participated in individual semistructured interviews. Interview transcripts were analyzed using thematic analysis, and a process of member checking was used to enhance the trustworthiness of findings reported. Results The importance of promoting partnership emerged as the overarching theme. Audiologists valued promoting partnership with family members so that a shared understanding could be established, family members could be active participants with distinct roles in hearing rehabilitation, and the rehabilitation outcomes for the person with HI c...

Objective-The present study aimed to explore the nature of parental involvement in the intervention of children with hearing loss, as experienced by parents. Design-A qualitative descriptive methodology was adopted to conduct semi-structured in-depth interviews with a purposive sample of parents who have a child with hearing loss. Study Sample-Seventeen parents of 11 children aged 6 to 9 years participated in this study. Results-The overarching theme of parents taking the central role was identified using thematic analysis. This overarching theme connected five themes which described the nature of parental involvement: (1) parents work behind the scenes; (2) parents act as 'case managers'; (3) parents always have their child's language development in mind; (4) parents' role extends to advocacy for all children with hearing loss; and (5) parents serve a number of roles, but at the end of the day, they are parents. Conclusions-The results indicate that parental involvement in the intervention of children with hearing loss is multifaceted in nature and incorporates a broad range of behaviours and practices. These findings have important implications for the provision of family-centred practices. Keywords children; hearing loss; parental involvement; intervention; family-centred practice Recent estimates indicate there are 32 million children in the world with a hearing loss of mild or greater severity in the better ear (World Health Organization, 2013). In Australia, early intervention services are offered to children with hearing loss and their families from birth to school entry. Services are delivered through home visits, family visits to a centre, telepractice, or a combination of these three options. Families access services from a range of professionals such as ear, nose and throat specialists (ENTs), paediatricians, audiologists, speech pathologists, and occupational therapists. Formal schooling begins with a foundation year (e.g., kindergarten, preparatory year, and transition), followed by primary and

More than 50 years of research has demonstrated the profound effect that aphasia has on people with the condition and their family members. In the International Classification of Functioning, Disability and Health, the World Health Organization described the impact of an individual's health condition on a significant other as "third-party disability." Recent research has described how third-party disability can occur in family members of people with aphasia post-stroke. Despite the extensive history and ongoing relevance of these findings, family-centered rehabilitation has been slow to integrate into clinical practice and policy. The aims of this article are (1) to provide an overview of third-party disability in family members of people with aphasia; (2) to consider how third-party disability can be addressed through family-centered care and to identify some of the barriers to family-centered care; and (3) to describe The Family Aphasia Measure of Life Impact (FAMLI), a tool for measuring third-party functioning and disability in family members of people with aphasia, identifying family rehabilitation needs, and measuring outcomes of family-centered care.

This research was supported by an Australian Government Research Training Program Scholarship. The authors would like to thank all families and professionals who participated in this study as well as Jenny Atkins who conducted the interviews. The authors acknowledge the financial support of the HEARing CRC, established under the Australian Government's Cooperative Research Centres (CRC) Program. The CRC Program supports industry-led collaborations between industry, researchers and the community.

Patient- and family-centered care has been shown to improve outcomes across a range of health conditions. The purpose of this study was to determine the impact of interventions to improve the patient- and family-centeredness of care (PFCIs) on the effectiveness of care of young adults (16–25) with chronic health conditions. A segregated design mixed-methods systematic review with meta-analysis and meta-synthesis of the literature was conducted. Thirteen quantitative papers and three qualitative papers were identified for inclusion. Random-effects meta-analysis was performed on quantitative findings, and a meta-synthesis was performed on qualitative findings. Preliminary evidence suggests that PFCIs were associated with improvements in the self-efficacy of young people with chronic health conditions. However, there were very few identified studies, and those that were identified were primarily in the field of mental health, requiring ongoing further research.

Background: Family-centred care (FCC) is recognized as best practice in the delivery of early intervention services for children with hearing loss (HL) and their families. However, there has been little research involving direct observation of family-centred communication practices in paediatric hearing habilitation appointments, which means little is currently known about how family members are involved within appointments, and how FCC is accomplished by health professionals through their interactions with families. Aims: To examine the interaction between hearing healthcare professionals, children with HL, and their parents within video-recorded paediatric hearing habilitation appointments (including both audiology and speech and language therapy appointments), with a particular focus on how parents were involved in the interaction. Methods & Procedures: The data for this study involved a corpus of 48 video-recorded paediatric hearing habilitation appointments from three clinical sites (including 33 audiology appointments and 15 speech pathology appointments). Participants included 14 audiologists, 8 speech and language therapists, 41 children with HL (aged 18 months and over) and 48 of their attending family members (e.g., parents/carers). The data were analyzed using conversation analysis. Outcomes & Results: Analysis revealed one specific practice that health professionals used to engage parents in the interaction during child-directed assessment and therapy tasks: that of 'parent-directed commentaries', where health professionals shifted their attention to the parent(s) to describe or evaluate what they were observing during appointment tasks. Health professionals were observed to produce two types of parent-directed commentaries: (1) a positive evaluation of the child's just-prior response; and (2) an account for the child's prior behaviour (sometimes also accompanied by a positive evaluation). These commentaries appeared at systematic points in the interaction when the child had been displaying difficulty with their response to the health professional. The parent-directed commentaries accomplished several important functions: they engaged the parent's attention in the interaction; focused the parent's attention on positive responses from the child (while shrouding less positive responses); played down potential negative perceptions of the child's previous missed/incorrect responses; and provided parents with reassurance of their child's progress during the ongoing task. Conclusions & Implications: The parent-directed commentaries identified in this study provide an example of the practical, interactional resources that health professionals can draw on within paediatric appointments to facilitate FCC with parents.

Individuals with severe to profound hearing loss are likely to present with complex listening needs that require evidence-based solutions. This document is intended to inform the practice of hearing care professionals who are involved in the audiological management of adults with a severe to profound degree of hearing loss and will highlight the special considerations and practices required to optimize outcomes for these individuals.

This study aimed to explore and compare families’ and professionals’ perspectives on the implementation of family-centered care (FCC) (Moeller, Carr, Seaver, Stredler-Brown, & Holzinger, 2013) during the period between diagnosis of hearing loss (HL) and enrollment in early intervention (EI). A convergent mixed-methods study incorporating self-report questionnaires and semistructured in-depth interviews was used. Seventeen family members of children with HL and the 11 professionals who support these families participated in this study. The results suggested that the services engaged during the transition period partially adhered to the principles of FCC, including the provision of timely access to EI services and provision of emotional and social support. However, areas for improvement identified include strengthening family/professional partnerships, shared decision-making processes, collaborative teamwork, program monitoring, and consistency in the provision of information and supp...

The aim of this survey is to review which associations have become members of WCPT, to identify the causes of the delay in joining the WCPT for the others and to describe the difficulties encountered in this process. Methods: This descriptive survey includes five national physiotherapy associations who have sent their applications files to the WCPT in January 2011. A pre-tested qualitative questionnaire was sent via Internet to their executive office in July 2014. The questions covered the period of exchanges between national associations and WCPT from December 2010 to June 2014. The analysis of the data was done manually. Results: All five associations participated in the survey. After answering WCPT requirements, only one of the five associations was accepted in 2013 and will be confirmed in 2015, following amendments made. One didn't answer to the questions sent by the WCPT, and the three others are still on discussions with the WCPT executive committee. One of the reasons of the late application process to the WCPT, is that none of the associations representatives knew about the existence of such an organization before their regional meeting held in 2010. Regarding the difficulties in the membership process, the first was the language barrier. The second challenge was to