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This paper explores the perception of "relatives" during the rehabilitation of young adults with severe acquired brain injury (SABI). This longitudinal qualitative study followed eight young adults with a SABI from hospital discharge to a year and a half after discharge. The design encompassed professional records, interviews, and surveys, including a name generator list completed by the young adults and focus group interviews with both their families and professionals. We apply a sociological theoretical framework concerning friendship, and we employ social network analysis (SNA) methodology to capture, visualise, and analyse the young adults' significant social relations. Social relations engaged as relatives during rehabilitation are to a large extent determined by the perceptions of professionals and the parents of the young adult. These perceptions contain a limited number of social relations, with priority given to biological and juridical ties. This might reflect the reduced social support available for the young adult, who initially had a much larger social network. The authors suggest a professional rethinking of who "relatives" are as well as considering these social ties as dynamic. Rehabilitation professionals must be aware of and pay attention to differing perceptions that exist as to who qualifies as significant social relations in order to reconsider the practical implementation of relative involvement. The perception of who relatives are during the rehabilitation process should be reconsidered and extended to include who the young adult perceive as significant social relations. Relatives are not a fixed entity and should be considered dynamically throughout the rehabilitation process. Social relations of the young adult must to a larger extent be considered during rehabilitation to prevent social isolation in the long run. [ABSTRACT FROM AUTHOR]

Peer-befriending, where support is offered by someone with shared lived experience, is an intervention that may facilitate successful adjustment in people experiencing post-stroke aphasia. This paper explores the experiences of the peer-befrienders. People with aphasia were recruited as peer-befrienders within the SUPERB trial investigating befriending for people with post-stroke aphasia. The intervention comprised six visits over three months. Peer-befrienders were matched with at least one befriendee and received training and ongoing supervision. They were invited to participate in in-depth interviews which were analysed using framework analysis. All 10 befrienders participated in interviews, reporting on 19 matches. Seven main themes emerged: content of the sessions; befriender–befriendee relationship; negotiating the visits; handling boundaries and endings; positive impact of the befriending for befrienders and befriendees; and beliefs about the nature and value of peer support. While befrienders described challenges, such as negotiating journeys and witnessing distress, the role was perceived as a "secure challenge" due to the support and training received. Befrienders perceived the role as enjoyable and rewarding, and felt they were making a positive difference. They were unanimous in believing that people with aphasia can offer unique and valuable support to others with aphasia. ClinicalTrials.gov identifier NCT02947776, registered 28th October 2016. People with lived experience of stroke and aphasia were able to offer emotional and social peer support to others with aphasia within the SUPERB trial. Although there were challenges, peer befrienders perceived the role as rewarding and satisfying. Peer befrienders valued the training and ongoing supervision and support they received to deliver the intervention. It is recommended that rehabilitation professionals considering offering peer-befriending schemes provide training and ongoing supervision to support peer-befrienders fulfil their role, as well as practical support with, e.g., arranging visits. [ABSTRACT FROM AUTHOR]

This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA. This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis. Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency. The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia. There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia. People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. This includes flexible access to mental healthcare and speech and language therapy. In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support. Training to improve aphasia competency is imperative for healthcare workers. [ABSTRACT FROM AUTHOR]

Patients with a rare cancer often face delays in their diagnostic and treatment trajectory, which may affect their work. In this study, we explored experiences and needs of: 1) patients with a rare cancer regarding return to work (RTW) and work retention, and 2) (health care) professionals (HCPs) regarding work-related support of patients with a rare cancer, throughout their disease trajectory. Semi-structured, in-depth interviews with working-age patients with a rare cancer (n = 16), and HCPs (n = 9) were conducted. During the interviews, a predefined topic list was used. Interviews were transcribed verbatim and analysed by means of thematic analysis. In total, three themes emerged from the interviews: 1) Awareness in patients and HCPs as a first step towards work, 2) Being/becoming an expert is a tough job, and 3) Enhancing employability through early personalized guidance. Patients with a rare cancer are confronted with uncertainties regarding work, due to an overall lack of knowledge and experience with these types of cancer. Raising awareness among patients, HCPs and employers about rare cancer and its implications, and providing timely individualized, supportive occupational care are required to improve rare cancer patients' ability to work. Recognizing and paying attention to the work-related consequences of a rare cancer diagnosis and its treatment is essential to facilitate rare cancer patients' occupational rehabilitation process. Multidisciplinary collaboration and involvement of HCPs specialized in rare cancer are required to provide suitable work-related support. A personalized approach is necessary to adequately address rare cancer patients' RTW and work retention needs. [ABSTRACT FROM AUTHOR]

Identifying the factors impacting physical activity (PA) among adolescents and young adults with cerebral palsy (CP). Four focus groups were conducted, with a total of 22 participants with CP, aged 14–24 years, Gross Motor Function Classification (GMFCS) I–III. Our qualitative analysis drew on grounded theory and used Atlas software. Findings revealed four categories of factors impacting PA: (1) Musculoskeletal-pain and additional impairments related to activity limitations; (2) knowledge and exercising skills, and life skills such as problem-solving, decision-making, planning and organizing; (3) availability: lack of transportation, professional guidance, adapted and community-based programs, especially enjoyable activities; (4) social support from professionals (mainly physiotherapists) and peer support with socializing opportunities. Many opposed parental involvement. Those who attended special education schools and had moderate to severe learning disabilities saw PA as an opportunity for social contacts, limited by lack of availability. Those in mainstream schools with mild to no learning disabilities used PA for relieving pain and preserving function, limited by difficulty balancing PA and life goals. Service providers should inculcate knowledge and active-living skills during the transition to adulthood. Professional guidance needed to ensure inclusion in communal PA and offer adapted programs for young people with CP. There is a need for ongoing, accessible, adapted, community-based physical activity programs for young adults with CP guided by skilled professionals that can provide them with opportunities for enjoyable activities involving social interactions. When planning treatment interventions for children and young individuals with CP, healthcare providers should be aware of past therapeutic experiences and in collaboration with parents, are encouraged to be sensitive to possible tensions which may exist regarding their body care. Healthcare and educational professionals should provide young people with CP and their families with theoretical and practical knowledge about physical activity and its health benefits, as well as information about exercise options. Developing life skills in young adults with CP is important for helping them to effectively engage in physical activity and develop the competencies needed to achieve long term physical care. [ABSTRACT FROM AUTHOR]

The current study reports the results of open-ended questions from a follow-up survey of adults with sensory loss and their spouses who had previously taken part in an online study. In total, 111 participants completed the survey (72 adults with a sensory loss and 39 spouses). Open-ended questions asked about the overall experience of living with sensory loss, sensory loss-related challenges, and support and coping mechanisms. Thematic analysis was used to identify dominant themes in participants' responses. Three core themes capturing their overall experience emerged: (1) sensory loss-related challenges, (2) support and coping, and (3) adjustment and readjustment. Sensory loss was characterized as a challenging experience, causing communication and emotional disturbances. Coping strategies reported by both partners included the use of assistive technology, positive re-appraisal, acceptance and/or denial of the loss, while support strategies were mostly derived from the comments of spouses (for AWSLs), family members and peer networks (for both partners). Finally, respondents described sensory loss as an adventurous learning experience. Our findings underscore the significance of considering sensory loss from a social relational/family perspective and highlight the importance of addressing the needs of both adults with sensory loss and their partners in treatment and rehabilitation. Study highlights the need to consider sensory loss from a relational/family perspective. Healthcare professionals should try to increase the involvement of significant others and close family members (e.g., spouses, parents, children) into the rehabilitation process. Greater emphasis should be placed on exploring and reinforcing positive experiences and attitudes associated with sensory loss during counselling/rehabilitation sessions. Improved education about sensory loss for both the general public and health care professionals could minimize the adverse outcomes associated with sensory loss. [ABSTRACT FROM AUTHOR]

The aim of this study was to understand the views of falls service practitioners regarding: their role in supporting self-management of falls prevention; and a transition pathway from National Health Service (NHS) exercise-based falls interventions to community-run exercise programmes. Semi-structured interviews were conducted with physiotherapists, nurses, and rehabilitation assistants (n = 8) who worked in an NHS falls service. Data were analysed using thematic analysis. Certain aspects of supporting patients in self-management were deemed to be within or beyond the scope of falls service practitioners. Challenges in supporting transition to community-run programmes included: practitioner awareness and buy in; patient buy in; and patient suitability/programme availability. Practitioners sought to be patient-centred as a means to engage patients in self-management of falls prevention exercises. Time-limited intervention periods and waiting list pressures were barriers to the promotion of long-term self-management approaches. A disconnect between falls service interventions and community-run programmes hindered willing practitioners from supporting patients in transitioning. Unless falls risk and prevention is seen by healthcare providers as a long-term condition which requires person-centred support from practitioners to develop self-management approaches, then falls services may only be able to offer short-term measures which are potentially not long lasting. Falls rehabilitation practitioners need to take a person-centred approach to engage patients in self-management of falls prevention exercises. Providing information and signposting to exercise opportunities such as community-run programmes following falls service interventions should be viewed as being within the scope of the role of falls service practitioners. Rehabilitation practitioners should consider viewing falls risk as a long-term condition, to promote longer-term behavioural change approaches to ongoing engagement of exercise for falls prevention. [ABSTRACT FROM AUTHOR]

Work-disability following musculoskeletal injury causes a significant burden for individuals and healthcare systems. Research into work-disability prevention has investigated the ability of psychosocial factors to predict return-to-work in workers with musculoskeletal injuries. Recent research indicates that both return-to-work expectations and workplace supports influence return-to-work outcome. However, how these mechanisms operate to influence outcome is still largely unknown. We undertook a qualitative study involving semi-structured interviews with workers from diverse backgrounds who were undergoing vocational rehabilitation in New Zealand following a musculoskeletal injury. Interviews investigated the injured workers' experiences of workplace supports and asked in-depth about what contributed to their expectations of returning to work. Thematic analysis was used to analyse and interpret the data. Analysis identified four key themes. We found that what workplace supports were offered and how they were taken up was related to systemic factors, and trust. We also identified a link between the offer of support from the workplace and return-to-work expectations. Finally, the actions of workers' compensation and healthcare providers during workers' recovery were reported to influence supports, expectations and the confidence injured workers experienced in their return-to-work outcome in both overt and subtle ways. This study indicated that actions of the workplace, healthcare providers and workers' compensation parties can all influence workplace supports, return-to-work expectations and return-to-work outcome. These findings therefore implicate the actions of these stakeholders in work-disability prevention efforts. Positive return-to-work expectations are increasingly shown by research to be related to positive return-to-work outcomes for injured workers. Trust between the worker and the company can underpin the provision of supports for return-to-work, which in turn can influence worker confidence and expectations of return-to-work. Consideration of workplace culture and relationships when healthcare providers interact with employers can be crucial in fostering trust and enabling appropriate workplace supports. The ways in which workers compensation processes are executed can also affect workplace relationships, and therefore influence the provision of appropriate return-to-work supports. [ABSTRACT FROM AUTHOR]

To help enhance participation, the study aims to identify and document a comprehensive list of environmental barriers for people with SCI in the broad travel setting. Semi-structured interviews were conducted among four stakeholder groups: people with SCI (n= 39), caregivers and family members of people with SCI (n= 24), therapists who work with people with SCI (n= 9), and travel professionals specializing in accessible travel (n= 11). Five major categories of travel barrier emerged from the interviews: Partial Accessibility, Systemic Ignorance, Travel Hassles, Poor Service Performance, and Lack of Support. Detailed barriers in each category are described. The analysis of multi-stakeholder perspectives indicates while respondents with SCI offered the most specific information about the barriers, family members/caregivers were most concerned about the impact of systemic ignorance on their loved ones. Therapists focused on offering their clients tools to overcome barriers, and travel agents emphasized their limitations of serving customers with disabilities. Results of the study should help not only health and travel professionals better assist individuals to reintegrate into society after SCI, but also travel and hospitality businesses to better meet the accessibility needs of people with SCI. Travel is important to full participation in society for people after SCI. The study has identified five categories of barriers to travel participation after SCI: partial accessibility, systemic ignorance, travel hassles, poor service performance and lack of support. While traveling is important for participation in society for people with SCI, rehabilitation professionals should work together with policy makers, travel and hospitality businesses and agencies to lower the found barriers. [ABSTRACT FROM AUTHOR]