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This paper authentically represents the voices of non-verbal children with cerebral palsy using a case study design. Policy suggests that children should have the right to play and leisure opportunities, however non-verbal children with cerebral palsy have fewer choices. Additionally, children with communication, learning and mobility limitations are usually excluded from research. The aim of this research was to capture the voices of non-verbal children by exploring their well-being impact in terms of their experiences and choices about their level of participation in recreational activities. A qualitative case series study included interviews, observations, photographs and diaries. Where possible, the diaries were completed by both caregivers and children. Data were analysed thematically, and the lens of positioning theory applied. Seven children aged nine to sixteen years participated. The findings showed how equipment, people and environments enabled or hindered the children's participation. The children also advocated as champions for their own well-being. Positioning theory was applied across the data and was adapted offering a way to better understand the children's well-being responses. The findings demonstrate how these children were able to self-advocate, demonstrating their well-being by their intentional behaviours from their level of participation in a recreational activity. The voices of non-ambulant and non-verbal children are underrepresented in the literature. This study offers an innovative approach to highlight their voices using visual data. The images project the narrative about their choices for participation in recreational activities. The proposed kaleidoscope of well-being offers a way to demonstrate the fluctuations in their emotional responses from their participation. Choices for participation in recreational activities remains limited for non-ambulant and non-verbal children with cerebral palsy. Designers and policy makers should consider how equipment and environments can be adapted or created to increase the choices for non-ambulant and non-verbal children with cerebral palsy. Practitioners in health and social care should consider how to listen to the voices of non-verbal and non-ambulant children with cerebral palsy and their parents/guardians and work towards jointly setting participation goals to affirm their strengths. [ABSTRACT FROM AUTHOR]

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]

Purpose: Little is known about the barriers and facilitators to pregnancy, birth and motherhood for disabled women within the New Zealand context. Our study explored this deficit with the aim of improving health care interventions and support for disabled mothers. Methods: This paper reports on the third phase of a mixed-methods study. The first two phases used semi-structured individual and focus group interviews with disabled women, and health professionals, involved in maternity and postnatal care and has been reported elsewhere. Phase 3 utilised a modified Delphi technique with both groups of participants to seek consensus on the prioritisation of recommendations from the study. This article focuses on the disabled women's recommendations. Results: In all, 20 disabled women took part in the Delphi phase of the study (28% of the cohort from Phase 1). In total, 11 key recommendations were identified by the disabled women, with the top seven discussed in detail here. Conclusions: Health professionals and health systems could, and arguably should, utilise a matrix of these recommendations to facilitate a review of service responsiveness to disabled women. [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]

"Self-management" empowers individuals to take responsibility for their healthcare through skill-building, personal growth, and self-efficacy related to chronic health condition management. Self-management approaches may benefit people with aphasia (PwA); however, PwA are often excluded from stroke self-management research and there is no published research reporting on aphasia-specific self-management programs. Communication partners (CPs) are involved in the rehabilitation and day-to-day lives of PwA, thus giving them unique insights and knowledge of PwA needs. The present study aimed to investigate CP experiences and perspectives regarding aphasia self-management and to explore CP perceptions of the use of technology in aphasia self-management. In-depth, semi-structured interviews with 14 CPs living in Australia. Interview data was analysed using qualitative content analysis. Analysis revealed six core themes: (1) aphasia self-management is embedded into everyday life, (2) CPs provide comprehensive self-management support, (3) speech-language pathologists (SLPs) provide tools and support to enable PwA to self-manage, (4) aphasia self-management can be enhanced by technological supports, (5) potential positive outcomes of aphasia self-management, and (6) factors influencing successful aphasia self-management. Aphasia self-management programs should focus on individual needs, functional communication in daily life, and social interaction. PwA and CPs are central to these programs, assisted by SLPs. Technology should be explored to augment aphasia self-management. Communication partners suggest that people with aphasia are already engaging in aspects of self-management and that more formal aphasia-specific self-management approaches may be beneficial. Dedicated aphasia self-management programs should be situated in daily life with a focus on functional communication, life participation, confidence, and independence. Communication partners, speech-language pathologists, and technology are key support sources for aphasia self-management. Further input should be sought from communication partners in the development of aphasia self-management programs. [ABSTRACT FROM AUTHOR]

To investigate factors influencing provision of care and support to older adults with traumatic injury in Australia, from a health service and policy perspective. Semi-structured interviews were undertaken with 16 clinicians, support providers, researchers, policy makers, and representatives from peak bodies in Australia, who had experience across injury, ageing, and disability sectors. A thematic analysis was performed using a framework approach. Themes identified included prolonged injury recovery in older adults, limited accommodation options, restricted access to preventive care, escalating care needs over time, issues with siloed funding schemes and funding availability, and the need for advocacy to coordinate care across different schemes. Certain themes were specific to people who were older when injured. Others related to people who had acquired an injury at a younger age and were ageing with injury. However, most themes had relevance for both groups. For older adults, this research has highlighted a range of cross-sector problems which impact upon the potential to recover from injury and to age well with injury. To improve the lives of older adults with injuries, Australia needs better coordinated system interfaces, shared funding models or packages of care across sectors, and improved advocacy and case management. To address the lack of long-term, multi-disciplinary preventive care for age-related conditions and secondary complications in people with injuries, older adults may need more prolonged, or individualised, care following injury, episodic health checks, and a greater focus on long-term health care. Accessible and well-coordinated specialist housing and support responses, that offer timely access to health care professionals and carers trained in both ageing and disability, and enable greater support for "ageing in place", are required to manage changing care needs of people ageing with injury. There needs to be greater involvement of geriatricians, nurses, and allied health care professionals within the aged care sector in order to care for people with complex needs, including older adults with injury-related disability. To reduce gaps in care and support for injured older adults, Australia needs better coordinated system interfaces, shared funding models or packages of care across sectors. [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 purpose of the current review is to synthesize the evidence of patients' perspectives of recovery after hip fracture across the care continuum. A systematic search was conducted, focusing on qualitative data from hip fracture patients. Screening, quality appraisal, and a subset of articles for extraction were completed in duplicate. Themes were generated using a thematic synthesis of data from original studies. Fourteen high-quality qualitative studies were included. Four review themes were identified: recovery as participation, feelings of vulnerability, driving recovery, and reliance on support. Patients considered recovery as a return to pre-fracture activities or "normal" enabling independence. Feelings of vulnerability were observed irrespective of the time since hip fracture and only diminished when recovery of function and activities enabled participation in valued activities, e.g., outdoor mobility. Participants expressed a desire to engage in recovery with realistic expectations and the benefits of meaningful feedback reported. While reliance on healthcare professionals decreased towards a later stage of recovery, reliance on social support persisted until recovery was perceived to have been achieved. Patient perspectives highlighted hip fracture as a major life event requiring health professional and social support to overcome feelings of vulnerability and enable active engagement in recovery. Rehabilitation professionals should ensure expectations and goals are set early in the recovery process. Rehabilitation professionals should ensure goals set with patients are tailored to the individual's pre-fracture activities or "normal" promoting independence. Rehabilitation professionals should monitor goals ensuring they are providing support, motivation, and managing expectations across the care continuum. Rehabilitation professionals should address patients' feelings of vulnerability, particularly in the absence of social support, and ensure appropriate ongoing input to maximize recovery. [ABSTRACT FROM AUTHOR]

Aging-related sensory impairments are among the most common and disabling comorbidities in people with dementia (PwD). This study explored the unmet support care needs (SCNs) from the perspectives of people with hearing and/or vision impairment in dementia (PwD), and their care partners in Europe. This was a two-phase mixed methods study. We administered standardized questionnaires of SCNs and quality of life (QoL) to PwD with hearing and/or vision impairment (n = 97), and their care partners (n = 97) in the UK, France, and Cyprus. Next, a purposive sub-sample of 34 participants (PwD and care partners) participated as focus groups (FGs) or semi-structured interviews to explore their SCNs in depth. Over 94% of the participants reported unmet SCNs (median, 13 (range 5–23)). Nearly three-quarters reported SCNs in the moderate to high range, with the most prevalent unmet SCNs for PwD being in the psychological (>60%) and physical domains (>56%), followed by the need for health information (>46%). Emergent qualitative themes were: (1) the need for tailored support care interventions; (2) care burden, social isolation, and loneliness arising from the combined problems; (3) the need for adequate support from professionals from the different fields, including education around the use of sensory aids. Both study phases revealed that SCNs were highly individualized. This cross-national study revealed that PwD with sensory impairment and their care partners experience a wide range of unmet SCNs, the interactions between sensory impairments, SCNs and QoL are also complex. A tailored intervention could address these unmet SCNs, including additional support with sensory aids, psychological support, more information about concurrent impairments, and joined up health systems providing care. A majority of participants with combined age-related hearing, vision, and cognitive impairment had unmet SCNs. The needs of care partners including the risk of loneliness and social isolation, need to be considered. Individually tailored, specific interventions for hearing, vision, and cognitive impairment should incorporate physical and psychological support, as well as education. [ABSTRACT FROM AUTHOR]

This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs. Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews. The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child's complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended. This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness. Children with autism spectrum disorder (ASD) are at high risk of developing overweight or obesity. The weight management support needs of parents of children with ASD and overweight or obesity are not being met. Support must be tailored to the child's needs, which are often complex. Health services that integrate expertise in both disability and weight management are needed for children with ASD and their families. [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]

To ascertain stakeholders' agreement and disagreement about inter-professional collaboration (IPC) when supporting the child with a developmental language disorder (DLD) in school. Two rounds of an online Delphi survey were undertaken with a purposive sample of 26 participants (researchers, practitioners and parents). Topics were informed by the views of children engaged in an earlier phase of the research. Agreement was set at an inter-quartile range of 1, with level of agreement measured using a five-point semantic differential scale. Qualitative data were examined using content analysis. There was strong agreement across the stakeholder groups about the child-led goals of IPC. Stakeholders also agreed that DLD is best viewed as a learning difference rather than a disorder. We identified ambivalence across the groups about the right of the child with DLD to have influence in decision-making about supports in school. We propose that IPC should be viewed as a means of ensuring the inclusion of the child in school. A shift in focus from remediating perceived deficits of the child, to affecting change in classroom practice, is also indicated. The need to reinforce the unconditional right of the child to have influence in decisions about supports is highlighted. Implications for IPC when meeting the needs of children with a developmental disability in school are outlined. The goal of inter-professional collaboration should be to ensure the inclusion of the child with a developmental disability in school. Interventions delivered in school should focus on changing practice in the classroom, rather than on the child's perceived deficits. The child with a developmental disability should be given influence in collaborative decision-making to ensure supports are relevant and responsive to their needs. [ABSTRACT FROM AUTHOR]

To develop an in-depth understanding of how survivors of acquired brain injury (ABI) experience fatigue and how fatigue affects everyday life. We conducted semi-structured in-depth interviews with 16 adults with ABI fatigue, recruited from support groups in south east UK. Interviews were analysed using the frameworks method. We developed four themes: experiencing fatigue in the context of everyday activities, struggling to make sense of fatigue, coping with fatigue, and adjusting social participation in the context of fatigue. Fatigue was comprised of mental, physical, generalised, and motivational fatigue. Balancing fatigue against participation in daily activities was influenced by coping strategies and social support. Opportunities to socialize or participate in meaningful activities provided incentives for participants to push through their fatigue. This study highlights complex interactions that potentially mitigate the impact of fatigue on everyday life. Educational and self-management approaches to fatigue need to account for different types of fatigue in the contexts of an individual's daily activity. Assessment of fatigue should capture in-the-moment experiences of different types of fatigue and activity. Social support and participation in meaningful activities may help individuals to break the negative cycle of fatigue and inactivity. Assessment of fatigue after brain injury should capture the multidimensional nature of fatigue as well as contextual information about exacerbating activities and environments. Development of personalised coping strategies that account for perceived triggers of different subtypes of fatigue may help ABI survivors to broaden their activity and social participation. Social support and opportunities to participate in personally meaningful activities may help prevent or break a negative cycle of fatigue and inactivity for some ABI survivors. [ABSTRACT FROM AUTHOR]

Physical activity confers many physical and psychosocial benefits for adolescent and young adult cancer survivors, yet most are not active enough to accrue benefits. Parental support for physical activity may be important to consider when exploring factors that influence physical activity in this population. Explore adolescent and young adult cancer survivors' experiences of parental support for physical activity received and their parents' experiences of support provided. Ten adolescent and young adult cancer survivors (Mage = 17.4 ± 3.2 years; 70% male) and one of their parents (50% fathers) were interviewed separately. Data were analyzed thematically. Participants' experiences were summarized into three main themes: (1) the basics – instrumental, informational, and emotional support, (2) companionship support – doing it together, and (3) role modeling – a double-edged sword. In general, there was congruence between participants' perceptions of the types of support provided and received for physical activity. However, parents felt their role was to provide instrumental, informational, and emotional support, whereas adolescent and young adult cancer survivors emphasized the importance of companionship support. Findings underscore the complexity of parental support for physical activity among adolescent and young adult cancer survivors. Developing and testing resources to empower adolescent and young adult cancer survivors to ask for parental support and to enable parents to support their child's physical activity is imperative. Many adolescent and young adult cancer survivors do not participate in enough physical activity to acquire physical and psychosocial benefits. Parental support may represent a key factor that influences physical activity participation. Rehabilitation professionals should consider the influence parents may have on adolescent and young adult cancer survivors' physical well-being post-diagnosis. Promoting co-participation may be a viable strategy to enhance physical activity participation among adolescent and young adult cancer survivors. [ABSTRACT FROM AUTHOR]

While the physical consequences of falls among wheelchair users with spinal cord injury have previously been examined, the psychosocial impacts remain understudied. Here, we explored the psychosocial impacts of falls and risk of falling from the perspectives of wheelchair users with spinal cord injury. Twelve wheelchair users (aged 41.8 ± 12.5 years; median 17.5 (range 3–44) years post-spinal cord injury) with traumatic spinal cord injury captured photographs of how falls and the risk of falling impacted their recreation/leisure and paid/volunteer work activities. Participants then engaged in photo-elicitation interviews to discuss the content depicted in the photographs. Interviews were analyzed using a thematic analysis. Two main themes emerged: (1) The varying concern about falling: While some participants experienced a high concern, others were not concerned about falling in their daily activities. The level of concern about falling varied among participants over time and across situations. (2) Fear, falling, and limitations: Falls could impact daily activities, parenting, work, leisure/recreation, and lead participants to want a life without a constant risk of falling. Falls have a significant psychosocial impact for some, but not all participants. Clinicians should explore whether and to what extent falls/fall risk have a lasting psychosocial impact, and work with individuals to create strategies that may reduce negative psychosocial impacts. This study highlighted that falls can have a significant psychosocial impact on the lives of some wheelchair users with spinal cord injury. Since a wheelchair user's concern of falls may change overtime, clinicians are encouraged to have ongoing dialogue about every wheelchair user's level of concern about falls. If a wheelchair user expresses a high concern of falls, clinicians are encouraged to provide appropriate supports and resources for individuals to continue engaging in meaningful activities. [ABSTRACT FROM AUTHOR]

Spina bifida myelomeningocele is a major cause of disability among adolescents. However, little research is available in low-income nations such as South Africa. Investigating the contributors and hindrances to well-being in adolescents with spina bifida myelomeningocele may yield novel insights. In this study we included both adolescents and their primary caregivers to examine their perspectives on caring for and facilitating improvements in the life of the adolescents living with spina bifida myelomeningocele. To identify and document the perceptions of adolescents with spina bifida myelomeningocele and their primary caregivers on the factors that contribute to and hinder the well-being of adolescents living with spina bifida myelomeningocele in South Africa. An explorative qualitative research design was utilized, guided by a positive psychology theoretical framework. Fourteen participants, consisting of seven adolescent-primary caregiver dyads, were interviewed. Data were analyzed using thematic analysis and coded inductively using ATLAS.ti software. We identified eight themes describing participants' perceptions on contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele. Contributing factors included: family support, social groups, special needs education, sport participation, striving for independence, and finding meaning in life. Hindrances included: structural (lack of resources, medical care and mobility challenges) and social (bullying and harmful friendships, secrecy about the condition, social isolation and unhappiness) hindrances to well-being. Acknowledging the contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele is crucial for guiding informed positive interventions and preventing blind spots. Given the limited number of positive contexts, concentrated effort is required to facilitate opportunities for growth in a range of environments. Primary caregivers lack insight into the positive and negative aspects of the adolescents' lives. We suggest families prioritize bonding time and open communication. Exploring the perspectives of adolescents living with spina bifida and their parents regarding well-being is important to develop appropriate interventions. Adolescents living with spina bifida value social support and social interaction as ways to maintain well-being. Special needs education institutions with curriculums tailored to adolescents with spina bifida promote comfort, acceptance, and personal excellence. Sport contributes to the mental, social and physical well-being of adolescents with spina bifida. Sport inspires and offers opportunities for success, it improves school attendance, increases positive affect, and provides opportunities for close relationships with friends and family. Finding ways to mitigate the stigma around spina bifida is necessary to improve adolescents' well-being within South Africa. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to understand parent engagement and disengagement in the delivery of occupational therapy to their children. Methods: This study used a qualitative interpretive description methodology. Focus groups and individual interviews were employed. Thirty-two occupational therapists participated in focusgroups or one-on-one interviews. Thematic analysis was used to analyse the data. Results: Thematic analysis of the data revealed two overarching themes which influenced parent engagement and disengagement in therapy: (1) Parent-therapist relationship and; (2) Therapist responsiveness. Within these two themes: parent feelings; time and timing of therapy; levels of engagement and factors influencing parent engagement were evident. Conclusions: Findings contribute to understanding parent engagement and disengagement in therapy. The findings extend current models of therapeutic engagement in occupational therapy informed by self-determination theory (SDT). Autonomy-, relatedness- and competence-supportive SDT strategies to enhance parent engagement in therapy are described. Occupational therapists reported that parents experience a range of feelings when engaged and disengaged in therapy. These feelings related to hopelessness, having confidence in the therapist and feeling supported, validated and empowered. Parent engagement and disengagement in therapy was described by occupational therapists as occurring at different levels: when it works well (engaged); engaged in the idea of therapy but not engaged in the doing of therapy (middle ground engagement); and when it doesn't work well (disengagement). Occupational therapists reported the importance of being aware of how the factor of time and family, service and therapist characteristics can variously impact parent engagement in therapy. Occupational therapists focus on the parent-therapist relationship and being responsive to parent needs and feelings when engaging parents in therapy. Occupational therapists can draw on principles from self-determination theory to guide them regarding the selection of strategies to engage parents in therapy. [ABSTRACT FROM AUTHOR]

Purpose: To build consensus around an optimal patient-reported outcome measure of cancer symptoms and patient needs to facilitate patient-provider communication and trigger referrals to supportive services. Methods and materials: The Grid-Enabled Measures platform was used to crowdsource and facilitate collaboration to achieve consensus. Respondents were invited to nominate and independently rate the usefulness of measures that: (1) have been actively used at a healthcare institution, (2) have a multiple choice or yes/no type format, (3) are applicable to adults with cancer, (4) are patient-reported, and 5) have psychometric data if possible. Discussion boards within the GEM workspace allowed respondents to identify barriers to implementing patient assessment and referral systems. Results: 166 individuals from various disciplines from 25 organizations participated. Six instruments were nominated, and 553 rating surveys were submitted. The three most highly-rated overall instruments were the Distress Thermometer, the James Supportive Case Screening, and the Functional Assessment of Cancer Therapy-General. Participants noted that wide-scale implementation of this process requires both identifying problems and providing clinicians with algorithms to facilitate appropriate referrals. Conclusions: Consensus reported three most highly-related measures as optimal for comprehensive screening and identification for referral by assessing multiple domains of functioning and quality of life. Gaining consensus on the best patient reported outcome measures is an important step towards improving access to cancer rehabilitation services. A consensus agreed on several measures to use for cancer rehabilitation screening. Functional Assessment of Cancer Therapy-General, National Comprehensive Cancer. Network Distress Thermometer and the James Instrument. The selected measures do not put undue burden on clinicians and patients. [ABSTRACT FROM AUTHOR]

Purpose: To describe shared meanings of success, happiness, and health of adults with cerebral palsy and physiotherapists. Materials and methods: Ethnography employed open ended/semi-structured interviews and structured questionnaires (Satisfaction with Life Scale, Beck Depression Inventory-II®, Oxford Happiness Questionnaire, Life Habits Questionnaire, Medical Outcomes Study-Social Support Survey, and PROMIS® Pain Interference Scale). Content analysis of qualitative data and principal components analysis of questionnaire responses identified shared meanings. Results: Fourteen adults with cerebral palsy and 15 physiotherapists (median age 46) had similar levels of education. For both groups, social achievements, personal goals, employment, and supporting a family defined success. Adults with cerebral palsy more frequently identified tenacity and persistence as important for success. Both groups described happiness as spending time with loved ones, recreational activities, and having purpose in life. Adults with cerebral palsy identified the importance of self-acceptance for happiness. For both, health included self-care of mind/spirit, cardiovascular and musculoskeletal wellness, and physical fitness (the ability to perform physical tasks). Analysis of questionnaire responses identified shared meanings (eigenvalue 41, 95% explained variance). Conclusions: Adults with cerebral palsy and physiotherapists share similar experiences, behaviors, and feelings about success, happiness, and health. This knowledge may improve communication, enhance evidence-based practice, and foster services to support wellbeing. Cerebral palsy is a life-long condition, but we know little about social and physical outcomes for adults with cerebral palsy. Lack of understanding about meanings of success, happiness, and health may be a barrier for consumers accessing and for providers delivering evidence-based services. Physiotherapists and adults with cerebral palsy share similar meanings (feelings, experiences, beliefs, behaviors) of success, happiness, and health- or wellbeing. Knowledge of this common ground may result in improved communication between providers and consumers, and foster more relevant and meaningful services to support the wellbeing of adults with cerebral palsy. [ABSTRACT FROM AUTHOR]

Purpose: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads). Methods: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman's rho correlations) measured the impact of the program on the dyads. Results: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: "carer perceived benefits", "carer readiness to change", "strategies used by carer to engage person with dementia", "barriers to the Tailored Activity Program uptake/implementation", and "person with dementia engagement". Quantitative outcomes showed an overall reduction of behavioral symptoms (F18.34 = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F18.03 = 0.375, p = 0.548). Conclusions: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation: The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to explore the role of gender in the transition to employment for young adults with physical disabilities. Methods: This study drew on in-depth interviews with a purposive sample of 33 participants (23 youth and 10 clinicians). The youth in our sample included 13 females (mean age 22.9) and 10 males (mean age 21.3) who had various types of physical disabilities. The person-environment-occupation (PEO) model informed our analysis. Results: Our research showed several similarities and some differences between young males and females with physical disabilities as they transition to employment and adulthood at the person, environment, and occupational level. At the person level, issues included managing their condition, self-advocacy, and willingness to ask for help. At the environment level, themes focused on parental and social support, accommodations, stigma and discrimination, and transportation challenges. Finally, in the occupation component of the PEO model, we found that males and females with disabilities had different levels of engagement in employment. Although most clinicians commented on gender differences, many reported that they did not tailor their clinical practice accordingly. Conclusions: Gender sensitive vocational approaches are needed for youth with disabilities as they transition to employment. Implications for rehabilitation: Clinicians, educators, and parents should encourage independence and self-advocacy skills among youth so that they are prepared to ask for accommodations that they need to succeed in a work environment. Clinicians and educators should present a variety of career and job options to youth, including science, technology, engineering, and math disciplines, an area where youth with disabilities, particularly females, are under-represented. Males may feel less able to self-advocate and seek support and may need additional assistance from clinicians, educators, and parents. Clinicians should tailor their vocational rehabilitation practices to the gender-specific needs of youth with disabilities. Clinicians and parents should ensure that both males and females have the resources and supports they need to be successful in their transition to employment. [ABSTRACT FROM AUTHOR]

Purpose: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications. Coping strategies used by scleroderma patients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma. Method: Three semi-structured focus group discussions were conducted with a total of 22 people with scleroderma. Interviews were recorded, transcribed, and analyzed using content analysis. Coping strategies discussed were analyzed through Lazarus and Folkman’s theoretical model of coping, including: (1) problem-focused, (2) emotion-focused, and (3) meaning-focused coping. Results: Participants reported using a combination of problem-focused (e.g., professional help; seeking disease-related information), emotion-focused (e.g., social support; adaptive distraction techniques), and meaning-focused coping strategies (e.g., benefit finding; goal reappraisal) to help them to cope with and manage their disease. However, many patients reported having difficulty in accessing support services. Conclusions: Scleroderma patients use similar coping strategies as patients with more common diseases, but they may not have access to the same level of support services. Accessible interventions, including self-management programs, aimed at improving problem- and emotion-focused coping are needed. Further, increased access to support groups may provide patients with opportunities to obtain social support and enhance coping. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to describe experiences of attitudes in the society of Sierra Leone from the perspective of individuals with poliomyelitis and people with amputations using orthotic or prosthetic devices. Methods: Individual interviews were conducted using open-ended questions. Twelve participants with amputations or polio were included. Content analysis was applied to the data. Results: The following six themes emerged during data analysis: Experience of negative attitudes; Neglected and respected by family; Traditional beliefs; The importance of assistive devices; People with disability struggle with poverty; and The need for governmental and international support. Conclusions: In Sierra Leone, people with disabilities face severe discrimination. They need to be included, recognized, and supported to a greater extent by the society, the community, and the family, as well as by the government and international organizations. Traditional beliefs have a negative impact on people with physical disabilities and are an important cause of discrimination in Sierra Leone. Prosthetic and orthotic devices are vital for people with physical disability and offer increased dignity. Prosthetic and orthotic services need to be accessible and affordable. Poverty affects access to education, employment, and health care for Sierra Leoneans with physical disabilities, forcing them to resort to begging to cover basic living needs. [ABSTRACT FROM AUTHOR]

Purpose:Family members often assume the role of driver for individuals who are not driving post-acquired brain injury (ABI). Given that return to driving can be unpredictable and uncertain, the impact of driving disruption on family members may vary at different stages post-injury. This study aims to understand the needs and experiences of family members over time during driving disruption following an ABI. Method:A qualitative prospective longitudinal research design was used with semi-structured interviews at recruitment to study, 3 and 6 months later. Results:Fourteen family members completed 41 interviews. The longitudinal data revealed four phases of driving disruption: (1) Wait and see, (2) Holding onto a quick fix, (3) No way out, and (4) Resolution and adjustment. The phases described a process of building tension and a need for support and resolution over time. Conclusions:Holding onto a quick fix is a pivotal phase whereby supports, such as engagement in realistic goal setting, are essential to facilitate family members’ resolution of driving disruption issues. Family members who see no way out might not actively seek help and these points to a need for long-term and regular follow-ups. Future research can explore ways to support family members at these key times.Implications for rehabilitationHealth professionals need to facilitate the process of fostering hope in family members to set realistic expectations of return to driving and the duration of driving disruption.It is necessary to follow-up with family members even years after ABI as the issue of driving disruption could escalate to be a crisis and family members might not actively seek help.Health professionals can consider both practical support for facilitating transport and emotional support when addressing the issue of driving disruption with family members. [ABSTRACT FROM PUBLISHER]

Purpose:Theoretical and empirical research findings attest to the workplace being a social environment in which co-workers have a critical influence on the employment outcomes and return-to-work (RTW) success of other employees. However, co-workers do not have a formal role in RTW planning. The aim of this study was to explore how managers responsible for developing and implementing RTW procedures view the role of co-workers in this process. Method:An exploratory qualitative pilot study was conducted in Canada. Participants (1 male; 13 females; mean experience in RTW = 11.8 years) were workplace (n=8) or RTW managers (n=6) with direct oversight of RTW plans. The participants were recruited via invitation from a research institute and were drawn from three different provinces. Data were gathered via open-ended questions and were coded and subject to thematic analysis. Findings:Three key themes were identified: (1) Managers view RTW as having little relevance to co-workers but expect them to cooperate with the arrangements; (2) Formal procedures are inadequate when psychosocial barriers to work resumption are present, so managers use informal strategies to engage co-workers’ emotional and social support; and (3) Managers have difficulty integrating RTW procedures with other legal obligations, such as privacy and confidentiality requirements. Conclusion:Existing arrangements for the development and implementation of RTW are sufficient most of the time, but may be inadequate when an injured worker presents with psychosocial barriers to work resumption.Implications for RehabilitationStandard RTW arrangements can be inadequate when a RTW plan requires active co-worker support.Privacy and confidentiality provisions can result in managers using informal procedures for information exchange and to engage co-workers.The use of risk management strategies – assessment, consultation and communication – could be used to include co-workers when workplace issues threaten the success of a RTW plan. [ABSTRACT FROM PUBLISHER]