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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]

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]

Little research has explored the process of disclosure decision-making from antecedents to outcomes. This paper presents a model of decision-making about disclosure of a mental health condition to the immediate supervisor in the workplace shortly after starting a new job. A qualitative descriptive design was employed to explore participants' experiences of the disclosure decision-making process, the disclosure event itself (if applicable), and their perceptions of the impact of the decision on personal, interpersonal, and organizational outcomes. The transcripts were coded and analyzed using directed content analysis. Twenty-eight participants were purposively selected to represent different disclosure decisions, sex, diagnoses, and maintenance of employment. Analysis identified goals and conditions/context were important antecedents for the disclosure decision. All participants discussed concerns about prejudice and discrimination if they disclosed, and, for those who chose to disclose, high stress and anxiety were described during the disclosure event; however, supervisor reactions were generally described as positive. Regardless of the disclosure strategy adopted, participants reported that their disclosure decision helped to support their self-acceptance and recovery. For those who disclosed, most perceived a positive response by their supervisor. However, the pervasive concerns of prejudice indicate there is still much work to be done. Decision-making about disclosure of a mental health condition to the immediate supervisor in the workplace is a complex process. Disclosure goals, the relationship with the supervisor and the workplace context are important antecedents to the disclosure decision. Careful consideration should be given to the planning of disclosure, particularly related to what information will be shared, how it will be shared, and an appropriate level of emotional content to enhance the likelihood of a positive response from the supervisor. Disclosure planning should take the supervisor's style and organizational norms into account. [ABSTRACT FROM AUTHOR]

Individualized funding of disability support services has implications for people's choices about when to share their home. This paper examines how people with disabilities made choices about who to live with and the factors influencing these choices. This paper discusses data from interviews with 30 people with mostly intellectual disabilities using individualized support services, 21 interviews with family members, four interviews with service managers, and a focus group with five support workers. The data come from a large evaluation of individualized housing support programs in New South Wales, Australia. Only some people had the opportunity to choose whether to share and with whom. Their choices were constrained by the range of housing options and their limited experience of them, even when they had support to make choices about shared housing or living alone. In some cases, the choices reflected a conceptualization of people with disabilities as different to other citizens in their rights and expectations about their social arrangements. The results have implications for information sharing, housing stock, and the need to challenge the positioning of people with disabilities relative to other people regarding choices about where and with whom to live. Many people preferred not to live alone, so as to improve their economic and social circumstances, and their choice and control. The choices about shared housing that many people and their supporters made were constrained by their limited experience of housing options or their familiarity with the range of choices made by other people with disabilities. Being able to draw on the material, social, and information resources of family made a big difference to their housing choices. It raises questions for policy implementation about whether individualized support may lock some people into shared housing arrangements by failing to include housing costs in the individual package. [ABSTRACT FROM AUTHOR]

This two-year (2016–2018) study aimed to identify what a good life is for Aboriginal people with disability in remote Central Australia and how service providers can support them to achieve a good life. This paper presents the findings that relate to barriers to delivering services for Aboriginal people with disability. In-depth interviews and focus groups were held with Aboriginal people with disability and their carers aged at least 18 years from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Lands and community organisations providing services there. The data were analysed using thematic analysis. There were 109 participants, of whom 47 were workers in service provider organisations and 62 were Aboriginal people. From the data, barriers to delivering services to support Aboriginal people to live a good life and solutions to overcome the barriers, were identified and described under the headings of environmental barriers and systemic issues. We discuss the policy implications of these findings with regard to addressing Indigenous disadvantage and how governments, service providers, communities, and Aboriginal people with disability and their families can work in partnership to address these barriers. Indigenous people with disability living in remote and very remote communities experience significant access and equity barriers to culturally responsive services that enable them to live a socially and culturally engaged life. Localised government and service provider disability policy approaches in Indigenous communities need to focus on both environmental and systemic issues. Greater investment in local remote communities is required to build the capacity of Indigenous families to support Aboriginal people with a disability to live a culturally and socially included life. [ABSTRACT FROM AUTHOR]

Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains. Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway. Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals. Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making. Support for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives. Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles. The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability. [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]

This article explores the differences between experiences of family role in in-patient rehabilitation in Turkey and England. The literature predominantly assumes family presence in rehabilitation as positive, because it draws upon Western cases, where care is delivered fully by professionals, and patients may feel isolated during hospital stays. Analyses of other contexts provide a more nuanced view. This qualitative research included in-depth interviews (Turkey: 42, England: 18) with people with disabilities (n = 39), their families (n = 8) and hospital staff (n = 13); hospital ethnography (Turkey), focus groups (England: 3 groups involving 4 doctors, 5 nurses, 6 therapists), and participant-observation (England: 5 families). Thematic analysis highlights experiences of family involvement across different contexts. Families are differently integrated in rehabilitation in England and Turkey. In England, where family presence is regulated and relatively limited, people with disabilities feel more isolated and see family as a major form of support. In Turkey, where family presence is unregulated and intense, they enjoy family as an agent of intra-hospital socialising, but find it disabling when it implies a loss of privacy and individuality. Family involvement in rehabilitation should support social interaction but allow people with disabilities to remain independent. Family involvement in rehabilitation can be both enabling and disabling. Existing literature draws upon rehabilitation practices, where family presence is limited and perceived as positive. An analysis of cases, where families are integral to the health care system (e.g., Turkey), can provide a nuanced view of family integration, which can be both enabling and disabling. Rehabilitation processes and health professionals need to integrate families in ways that will enrich social interaction, but still allow people with disabilities to retain their independence. [ABSTRACT FROM AUTHOR]

This article describes a mixed methods evaluation of a volunteer-delivered counselling service for people experiencing sight loss, to identify the outcomes, benefits, and challenges of this model of service provision within rehabilitation services. A mixed methods approach was used, with both outcome and process evaluation components. Outcomes for 817 service users were assessed pre-and-post service use, using standardised (CORE10) measures. Semi-structured interviews and surveys with 22 volunteer counsellors and 4 senior counsellors were conducted, to understand their experiences of the format, content, and delivery of the service. Clients presenting for counselling experienced significant levels of self-reported depression, anxiety, and feelings of bereavement. Analysis showed a significant positive change in clinical outcomes for service users who received volunteer-delivered counselling services. Volunteer counsellors saw the unique and specialist nature of the service as critical for its impact on clients, and reported benefits of volunteering for this service, including developing their skills with this client group. Volunteer-delivered counselling can be effective for people affected by sight loss, providing accessible and much-needed psychological support, which is relevant given current pressures on health and social care services. There are key lessons for future models of this type. Vision loss can have a profound negative impact on people's emotional and mental well-being, with many advocating for counselling and emotional support (CESS) to be included in low vision rehabilitative services. Despite this, access to psychological support is often overlooked in low vision rehabilitation, and access to CESS services is often poor. This study evaluated a volunteer-delivered CESS service, demonstrating that this model of service delivery is effective for this group. There are clear advantages to a volunteer-delivered model for those with sight loss, in terms of widening access, supporting integrated rehabilitative care, and reducing health inequalities. [ABSTRACT FROM AUTHOR]

Psychoeducational interventions are commonly used to improve mental health among the general population; however, their application among people with complex communication needs is under explored. This scoping review aims to identify the psychoeducational interventions utilised with people with complex communication needs, any adaptations to improve communication access, and outcomes for this population. The scoping review was conducted using the Arksey and O'Malley guidelines and included stakeholder consultations. A systematic search of the literature was conducted. Stakeholder consultations were conducted via semi-structured interviews with informants from three populations: people with complex communication needs, everyday communication partners and mental health workers. The search yielded 2112 articles. Twenty-four articles were retained for data extraction. Numerical analysis provided an overview of the existing literature. Thematic analysis highlighted the range of communication access strategies applied within psychoeducational interventions. Common aims and outcomes of interventions occurred across three interrelated themes: education, symptom reduction, and improved coping and wellbeing. Stakeholder consultations enabled contextualisation of literature. People with complex communication needs may benefit from psychoeducational interventions when effective, personalised communication access strategies are employed. Future research should include lived-experience perspectives to ensure the relevance of communication access strategies in mental health support. This scoping review adds to the evidence base supporting equitable access to mental health support for people with complex communication needs. A range of specific strategies are presented for mental health workers to consider when working with people with complex communication needs. Positive behaviour support (PBS) practitioners must be equipped to address the psychoeducational and mental health support requirements of people with complex communication needs. [ABSTRACT FROM AUTHOR]

To explore how stroke survivors' expectations and understanding of Early Supported Discharge (ESD) helped them make sense of their experiences, and shaped their engagement with the service. Data were collected as part of a study of large-scale implementation of stroke ESD: the WISE realist mixed-methods study. Semi-structured interviews were conducted with five purposefully selected stroke survivors from six sites in England implementing stroke ESD (n = 30). Participants were aged 32–88 years (20 males). Interviews were audio recorded, transcribed verbatim and transcripts were analysed using reflexive thematic analysis. Three overarching themes were identified: (1) ESD as a post-stroke recovery tool, (2) desire to recover quickly, (3) psychosocial impact and support. Stroke survivors were uncertain about what to expect when they first entered the service, however, their experience of ESD exceeded their expectations and increased their engagement with the service. Stroke survivors especially valued the goal-oriented approach the team adopted. Rehabilitation at home was perceived as positive and practical, encouraging independence within real-life contexts. Psycho-social support played an important role in the stroke survivors' rehabilitation. Ensuring stroke survivors are fully informed about ESD and what to expect, optimises engagement with the services, improves experience and could enhance outcomes. Informing stroke survivors about what to expect from ESD services could optimise engagement and improve their experience. The provision of personalised and target focussed therapy at home improves stroke survivors' experience and could potentially accelerate recovery. Preparing stroke survivors early for discharge from ESD can reduce anxiety and enhance engagement with the service. [ABSTRACT FROM AUTHOR]

Employment outcomes for individuals on the autism spectrum may be contingent upon employers' knowledge of autism and provision of appropriate workplace supports. We aimed to understand the organizational factors that influenced the organizational socialization of autistic employees. We wrote nine case histories based on interviews from managers, autistic employees, and job coaches. Intra-case analysis, then cross-case analysis, provided an understanding of organizational factors that lead to sustained employment of autistic employees. The quality of the relationship between managers and autistic employees was consistently seen as the key facilitator of organizational socialization and positive employment outcomes of autistic employees. These relationships, however, relied on the skilled facilitation of the job coach during each stage of the employment cycle (hiring, on-boarding, training, performance management), as they had an important role in building a mutual understanding between supervisors and employees. As such, our study draws upon and contributes to leader-member exchange theory. Consistent with prior research, our study shows the importance of high-quality relationships between supervisors and supervisees for positive employment outcomes of autistic employees in organization but adds skilled communication facilitation as a novel antecedent to leader-member exchange, as a potentially key factor for autistic employees. The relationship between the a manager and their employee is an important factor in effective organizational socialization and workplace outcomes for autistic employees. Job coaches can play a crucial role in building mutual understanding and high-quality relationships between managers and employees. Job coaches can support the inclusion of autistic employees by illustrating the multi-faceted socioemotional performance benefits over the longer term. [ABSTRACT FROM AUTHOR]

Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management. In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data. Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities. From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management. For people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs. Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists). People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use. People with aphasia should be heavily involved in the development of structured aphasia self-management approaches. [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]

Hip and knee osteoarthritis (OA) affect a large and growing proportion of the population. Treatment options are typically conservative making self-management a priority. Using trained peers to support individuals with OA has potential to improve self-management. To explore the process of engaging and training volunteers to become peer mentors; and to qualitatively evaluate the feasibility, acceptability and value of being a peer mentor to support others' self-management of OA. A qualitative evaluation of a peer mentorship support intervention reporting the processes of recruitment and training; and semi-structured interviews conducted with nine active peer mentors. Transcribed interviews were coded and analysed using framework analysis. It was possible to recruit, train and retain volunteers with OA to become peer mentors. The peer mentors benefitted from their training and felt equipped to deliver the intervention. They enjoyed social elements of the mentorship intervention and gained satisfaction through delivering valued support to mentees. Peer mentors perceived the mentorship intervention to have a positive impact on self-management of OA for mentees. Training volunteers with OA to become peer mentors was feasible and acceptable. Peer mentors perceived their support benefitted others with OA. They positively rated their experience of providing mentorship support. This study demonstrates that it is possible to recruit, train and engage older volunteers to become peer mentors for people with osteoarthritis. Training should highlight the significance of employing key self-management techniques such as goal-setting. Peer mentors acknowledged that they benefitted from training and delivering the mentorship intervention, and this impacted positively on their own osteoarthritis self-management. Careful consideration of matching mentors and mentees appears to enhance the success of mentorship support. Recognising the impact of mentorship support on mentees' self-management is central to peer mentors' sustained engagement with the intervention. [ABSTRACT FROM AUTHOR]

To explore the processes of community reintegration of children and families at least one year following a paediatric brain injury from the perspective of caregivers and outpatient/community service providers. A qualitative analysis of semi-structured interviews from outpatient or community service providers (N = 14; occupational, physical, and speech and language therapists, neuropsychologists, school counsellors, recreational providers) and caregivers of six children (N = 8) at least one year after their injury. Interviews were transcribed and thematically coded using deductive (employing Bronfenbrenner's ecological systems theory) and inductive approaches. Themes from both providers and caregivers indicated additional supports needed at all levels of Bronfenbrenner's ecological systems theory (i.e., individual, microsystem, mesosystem/exosystem, macrosystem, chronosystem). Participants felt that several characteristics would be needed in an ideal service system following paediatric brain injury including: community solutions ("it takes a village"), long-term approaches to care, and new financial approaches. The results suggest that children and families have substantial community reintegration needs following paediatric brain injury. Multi-system interventions are needed to support long-term community reintegration, especially those that increase communication and support transitions. There is also a strong need for alternative funding to support these efforts. Families with a child with a moderate to severe brain injury face challenges with community reintegration a year or more after their child's injury. Effort should be put into helping families navigate the complex medical, insurance, and school systems with a navigator service and step-down care to ensure a continuum of care and to support community reintegration. Special support should be provided during transitions, such as transitions from hospital care to outpatient care, and across school transitions. [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]

To advance the understanding of perceived social isolation among persons with spinal cord injury (SCI), the objectives of the present study were to explore: (1) experiences of perceived social isolation and (2) factors that contribute to perceived social isolation. Interpretive description qualitative methodology was used to conduct semi-structured interviews with 30 individuals with SCI from across Ontario (Canada) from November 2016 to August 2017. Data were analyzed using thematic analysis. Participants identified disruption to social networks that seemed to impact perceived social isolation. Five major themes were identified: (1) impact on structure and frequency of social network; (2) importance of feeling heard; (3) importance of employment, hobbies, and sports; (4) need to improve physical accessibility and built environment; and (5) individual characteristics. Changes in quality of social networks, rather than size, contributed to greater feelings of perceived social isolation. The built environment, maintenance of employment, hobbies, and sports, social media, and technology use, as well as individual traits, were also found to impact perceived social isolation. Future research should focus on the development of programs to help maintain or improve social network quality for persons with SCI to minimize the impact of perceived social isolation. Perceived social isolation, resulting from physical and environmental barriers, is a challenge that is faced by many individuals who are living in the community with a spinal cord injury (SCI). Rehabilitation and community programs should utilize an individualized approach to find solutions to challenges faced by this population to prevent the effects of perceived social isolation. Education on how to adapt to changes in social network, together with the provision of access to peer-to-peer support groups, and SCI specific return to work or leisure programs, is recommended as an essential component of rehabilitation. [ABSTRACT FROM AUTHOR]

To explore the conceptions of patients with persistent low back pain (LBP) of undergoing physiotherapy delivered in Finnish primary healthcare by physiotherapists who had participated in brief training in Cognitive Functional Therapy (CFT). As part of a feasibility implementation study exploring CFT in management of LBP in the Finnish primary healthcare system, we interviewed nine patients from four geographical areas in Finland after receiving care. We used a phenomenographic approach to explore the variation in their conceptions. The analysis revealed four descriptive categories: "hung out to dry," "stuck," "making sense and taking control," and "holistic approach to care and living," that varied based on six themes. Although the participants accepted this approach to care well, there was significant variation in patients' conceptions. Restricted access to care within the healthcare system and a lack of social support led some of them to feel they had been left alone to suffer with their pain. On the other hand, based on the results of this study, positive experiences of physiotherapy and good collaboration with the physiotherapist, wider social support outside of physiotherapy, a better understanding of the multidimensional nature of pain and the acquisition of self-management skills were reported as positive aspects of undergoing physiotherapy that may be related to positive treatment outcomes. The participants of this study saw undergoing physiotherapy delivered within biopsychosocial framework as different from their previous physiotherapy experiences and for some the process ended with feeling empty-handed and for others it could be a turning point in their lives. This study encourages the health care providers to create flexible care pathways and ongoing support for more vulnerable individuals so that they don't feel abandoned by the system. Professionals could also pay attention to building strong therapeutic alliance, help patients understand pain in biopsychosocial framework, take into consideration social support networks of the patients, and support patients toward effective self-management strategies. [ABSTRACT FROM AUTHOR]

Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated. Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes. Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of "decision-making" except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals' communication style influences engagement in decision making. PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement. People living with MND (plwMND) perceive they have few clinical decisions to make and viewed this process as "accepting a recommendation", rather than "making a decision" although early gastrostomy placement is the exception with considerable deliberation evident. Specialist multidisciplinary clinic advice is especially helpful for plwMND without dysphagia (swallowing problems) when considering early gastrostomy placement. Communication impairment may be a barrier to involvement in healthcare decisions and extra support to remain engaged is required. Some plwMND choose not to involve others in their decisions, and patients/families with medical or scientific backgrounds are more likely to collaborate with each other outside the context of clinic appointments. [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]

We explored the experiences of working-age and older adults with acquired vision impairment who pursued braille rehabilitation training, and the facilitators and barriers they encountered throughout this process. Semi-structured interviews of up to 90 min in length were conducted with 14 participants from across Canada who learned braille between the ages of 33 and 67 (Mdn = 46). Transcripts were analyzed by two researchers using interpretive phenomenological analysis. A variety of personal, social and institutional factors characterize the adult braille learning experience. Among these, participants highlight the role of prior identity and experience, the impact of access to resources and the cost of materials and devices needed to maintain braille skills. Findings also emphasize invisible barriers, including the role of societal perceptions towards braille, the level of support provided by family and friends, and the influence of unconscious biases towards braille and aging held by both adult learners and those around them. These findings provide important context to improve policies and practice in adult braille rehabilitation. As the prevalence of age-related vision impairment continues to increase, it will become imperative to understand the unique needs of working-age and older adults with acquired vision impairment who pursue braille. This study is one of the first to explore the experiences of working-age and older adults with acquired visual impairment who pursue braille rehabilitation training. Rehabilitation professionals must take into account prior learning and reading experiences which may shape the braille learning process. Family members require greater access to resources and support during the training process. There is a significant need for public education to address societal misconceptions about braille and blindness that can lead to a reluctance to use braille. Interactions with other braille users foster more empowering definitions of braille that align with the social model understanding of disability. [ABSTRACT FROM AUTHOR]

People aging with spinal cord injury (SCI) can experience the premature onset of comorbid conditions, as well as the development and progression of secondary health conditions. The aim of this study was to understand the subjective experiences of persons aging with SCI in relation to their surrounding social and physical environments, including the impact of barriers and facilitators. Material/Methods: Eleven individuals who had an SCI for more than ten years and were 45 years or older participated in a semi-structured phone interview about their experiences with healthy aging, social participation, social supports, and community barriers. Four main themes emerged in the qualitative data that captured the subjective experience of aging with SCI. These were: (1) Maintaining Physical Independence; (2) Importance of Resources and Special Equipment; (3) Planning Ahead; and (4) Finding Ways to Adapt. The findings from this study highlight the importance of looking beyond individual factors to consider the social and environmental factors that support continued independence and participation in society as people living with long term SCI experience their aging process. Qualitative research that delves further into the dynamics behind this process is needed to fully anticipate the needs of this growing population. People aging with spinal cord injury (SCI) who are engaged in their social and physical environments have become increasingly adaptive when faced with accelerating and secondary comorbidities. Programs and facilities should ensure universal access to prevention and self-management programs that target physical activity and health habits when considered in the context of a patient's socio-environmental constraints and resources. Clinical healthcare providers need to engage with their patients to develop an early intervention approach to preserve functional capacity while navigating potential future health problems. Clinicians should act as advocates for ongoing policy changes that help promote an environment more inclusive towards people aging with SCI. [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 understand the challenges in delivering comprehensive care for patients recovering from stroke in Guangdong Province, China. A cross-sectional qualitative study was conducted in two tertiary hospitals with different socio-economic characteristics in Guangdong Province, Southern China. Interviews were conducted with 16 stroke care providers including doctors, nurses, rehabilitation therapists and care workers. The interviews were audiotaped, transcribed and translated from Mandarin to English. Thematic analysis was used to draw out descriptive and analytical themes relating to care providers' experiences of existing routine stroke care services and the perceptions of challenges in delivering comprehensive stroke care. The interviews with stroke care providers highlighted three key factors that hinder the capacity of the two hospitals to deliver comprehensive stroke care. First, expertise and knowledge regarding stroke and stroke care are lacking among both providers and patients; second, stroke care systems are not fully integrated, with inadequate coordination of the stroke team and inconsistency in care following discharge of stroke patients; third, stroke patients have insufficient social support. While comprehensive stroke care has become a priority in China, our study highlights some important gaps in the current provision of stroke care. Comprehensive integrated stroke care is essential to maximize the effectiveness of stroke services and in China it needs to be further improved. Multidisciplinary stroke care systems should strengthen collaborations across all relevant disciplines and should include a clear role for registered nurses. Follow-up care after discharge needs more engagement with family caregivers. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to explore the physical, psychological and social wellbeing of veterans who have experienced limb-loss and to ascertain the factors that contribute to the ability of veterans to maintain their independence at various stages in their lives. Methods: Sixty two life-story interviews were conducted with 32 veterans (aged between 40 and 95) who had experienced limb-loss either during or after military service. Results: Three overarching superordinate themes and related sub-themes were generated from a detailed Framework Analysis "Barriers to transition" describes issues related to employment, legal support and compensation, stigma and loss of identity. "Disparity of care" highlights the issues related to military and civilian care and prosthetics service user experience. The final superordinate theme, "Enduring challenge of limb loss," considers stoicism, dealing with pain, mobility, physical isolation and social networks. Conclusions: The outcomes offer an opportunity to shape future health and social care policy around the requirements of veterans who have experienced limb-loss by understanding the complexity, and ascertaining the factors that contribute to, maintaining long-term independence. [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]

Most people with common mental disorders are working despite symptoms. This study explores individuals' experiences of a work-directed rehabilitation, provided by occupational therapists and physiotherapists, aiming to promote work capacity in persons with common mental disorders. A qualitative content analysis was used, and 11 women and 8 men with depression or anxiety disorder were interviewed. They were 25–66 years old, had different occupations and were working full or part-time. The participants experienced a process interpreted as Increasing belief in one's capacity through supported reflection and practice. This theme reflects the shifting between "reflecting" and "doing" through rehabilitation and the growing hope for change. The increasing belief in one's capacity was developed through three stages, comprised of the categories To be supported by a professional, To realise things about oneself and To try new strategies for change. Strategies suggested by occupational therapists and physiotherapists have the potential to promote work capacity in people who are working while depressed and anxious. The results may deepen the understanding among rehabilitation professionals about the importance of a person-centred approach to people with common mental disorders, and to combine reflection and practical exercises to support the development of work-related strategies. Work-directed rehabilitation provided by occupational therapists and/or physiotherapists is beneficial to people with common mental disorders. Rehabilitation professionals should focus on facilitating self-efficacy among people with common mental disorders. An individualised person-centred approach seems important in order to initiate change. [ABSTRACT FROM AUTHOR]

Purpose: A stroke is a sudden event which may leave individuals and their families ill-prepared to deal with the resultant disability. Several contextual factors can influence the recovery process. These factors, internal and external, exist interactively in the lived experiences of the survivors. The limited availability of rehabilitation centres that are located in urban centres meant that recovery predominately occurred outside of the biomedical health and instead relied upon the resources available to individuals and their families. Methods: A qualitative approach with data from in-depth interviews and observations were used to identify contextual factors that shaped recovery following stroke in a community. Twenty-seven individuals with stroke were drawn from a health and demographic surveillance system in Malaysia. Results: Hope and optimism, coping strategies, motivation and support from family and friends, and the use of alternative and complementary medicine shaped the process of recovery within a context where infrastructure is extremely limited. Conclusion: The identification of factors that facilitate the recovery process provides a background in which health care providers can utilise to improve their understanding of the stroke experience. Such understanding could be instrumental in aiding health professionals to offer the most effective help to their clients. Identification of contextual factors provides a background for the understanding of the stroke experience. Incorporation of religion into rehabilitation could support and maintain hope in recovery for the survivors and aid acceptance. A collaboration of healthcare professionals with traditional medicine therapists may prove beneficial for the rehabilitation of stroke survivors in Malaysia. [ABSTRACT FROM AUTHOR]

Background: To tailor future rehabilitation programmes for patients with chronic pulmonary obstructive disease, there is a need for more in-depth knowledge about what is essential to these patients and how they perceive their self-image while participating in rehabilitation. Therefore, this study aims to explore patients' experiences and perception of self-image during pulmonary rehabilitation. Methods: Twenty-one patients were followed by participant observations during standard rehabilitation complicity supplemented with final individual interviews. Phenomenological-hermeneutic analysis and interpretation were applied. Results: Through a rewarding peer fellowship, patients became engaged in rehabilitation and improved their capacity to embrace and manage their illness. Through a humorous interplay, encouragement to live with the life-threating disease developed. While understanding themselves in a wider perspective, patients enhanced enablement to shape life according to personal satisfaction. Although participating in the group-based programme was mostly invigorating, it was, however, sometimes perceived as a stressful overload. More individualized support from healthcare professionals was warrented. Conclusions: Group-based pulmonary rehabilitation can support chronic pulmonary obstructive disease patients towards significant change in self-image and health behaviour, leading to improved illness management. Enlarged opportunities to benefit from peer-fellowship and enhanced focus on what is essential to the participants might expand the rehabilitation yields. [ABSTRACT FROM AUTHOR]

Purpose: Stroke is an abrupt event that often leaves survivors with long term disabilities, causing role changes, and financial strains on households. The profound impact of stroke on survivors may lead to a decline in quality of life due to the physical, psychological, and social difficulties they experience. Taking Malaysia as an example, this study aimed to explore the impact of stroke on survivors and how health services influence their recovery in low and middle-income countries (LMIC). Method: An ethnographic approach with data obtained primarily through in-depth interviews was used. Twenty-seven participants identified as having suffered a stroke were drawn from a health and demographic surveillance system in Malaysia. Results: The physical and social disruption of the lives of stroke survivors was intensified by the resultant financial constraints placed upon individuals, families and households, compounded by inadequate support from the health, and welfare systems. Despite the disruption to their lives, most participants were, at least in part, able to reestablish their lives through various factors that include a strong family support and active coping strategies. Conclusion: In LMIC, recovery can be shaped by the family unit and through active coping strategies especially those in relation to spirituality. The impact of stroke on survivors and lack of specialized stroke care compromise the recovery process and quality of life for stroke survivors in low and middle-income countries. Support from the family and reinforcement of religious coping were judged to successfully aid recovery. Physical and emotional impairments as well as psychosocial wellbeing of survivors in the context of environmental factors need to be addressed. [ABSTRACT FROM AUTHOR]

Background: More than one billion people worldwide live with a disability. Despite advances in recognising inequalities experienced by people with disabilities, barriers to services and stigmatisation still exist. The aims of this study were to explore: (1) perceptions and experiences of services specifically available to people with disabilities and their caregivers and (2) the perception of disability. Methods: In-depth interviews were conducted with 20 caregivers of persons with a disability and 14 key informants in two cities in Peru; Lima and Iquitos. The social-ecological model was used as a framework to analyse and present data, stratifying the key barriers and opportunities at each level. Results: At the individual level, interviewees reported a lack of support at the time of diagnosis, poor coping strategies, and communicated their desire for, and willingness to participate in support groups if they were established. On the community level, education and awareness were reportedly lacking and acts of discrimination and stigmatisation were common. Participants described opportunities for community-level campaigns to increase exposure and awareness of disability rights and inclusion. A dissatisfaction with government programmes was reported, as services were not available to everyone, in part due to geographical and socio-economic barriers. Conclusions: The main findings were the lack of emotional, informational, and tangible support available to caregivers of people with disabilities, often exacerbated by lower socio-economic status; a lack of transparency of care pathways available to people with disabilities; and a lack of visibility of people with disability in both Lima and Iquitos. Support groups could offer additional support to caregivers of people with disabilities in Lima, mitigating existing gaps in services for people with disabilities, and their families. Education campaigns implemented on a community level could start to curb discrimination and stigmatisation of people with disabilities in Lima and Iquitos. A national census with inclusive language and methodology specifically designed to capture the percentage of the population currently living with a disability would give a real indication of what services are needed in Peru. The provision of clear, publically available routes of attention would assist caregivers and families to access services for people with disabilities. [ABSTRACT FROM AUTHOR]

Purpose: This article analyses the psychometric properties of the Social Provisions Scale 10-items version. Methods: The Social Provisions Scale was analysed by means of the polytomous Rasch model, applied to data on 93 young adults (16–30 years) out of school or work, participating in different nature-based services, due to mental or drug-related problems. Results: The psychometric analysis concludes that the original scale has difficulties related to targeting and construct validity. In order to improve the psychometric properties, the scale was modified to include eight items measuring functional support. The modification was based on theoretical and statistical considerations. Conclusion: After modifications the scale showed not only satisfying psychometric properties, but it also clarified uncertainties regarding construct validity of the measure. However, further analysis on larger samples are required. Social support is important for a variety of rehabilitation outcomes and for different patient groups in the rehabilitation context, including people with mental health or drug-related problems. Social Provisions Scale may be used as a screening tool to assess social support of participants in rehabilitation, and the scale may also be an important instrument in rehabilitation research. There might be issues measuring structural support using a 10-items version of the Social Provisions Scale but it seemed to work well as an 8-item scale measuring functional support. [ABSTRACT FROM AUTHOR]

Purpose: There is increasing interest in tailoring self-management support, but little detail is available on the relevance and impact of such approaches for people with progressive neurological conditions. The aim of this study was to draw on individuals' experiences to inform the practice of self-management support for these groups. Method: Community rehabilitation service users were purposively recruited and took part in in-depth qualitative interviews. Interviews were audio-recorded and transcribed. Data analysis was iterative and interpretative, taking a phenomenological approach. Strategies to enhance rigor were auditability, peer review, and researcher reflexivity. Results: The sample consisted of 10 adults (age 20–79 years) who were living with a range of progressive neurological conditions. Individuals demonstrated resourcefulness in developing practice-based self-management strategies. Beyond practical strategies, interviewees' experiences were signified by reflecting on and upholding a sense of identity and a desire for purpose against the background of losses and gains over time. Linking with this overarching theme of "Sense of self" were aspects of "My body and mind", "Time", "Space", "Relationships", and "What I do". Conclusions: Self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person's sense of identity and purpose. Self-management approaches for people with progressive neurological conditions need to take account of individuals' wishes to contribute, connect with others, and be valued as a person. Person-centred self-management support can be realized through a broader approach than solely managing disease progression. The experiences and words of people with progressive neurological conditions can be used to inform meaningful evaluation of self-management support to drive service delivery by measuring what really matters. Rehabilitation practitioners need to adapt their conceptualisations of goal setting to account for how people with progressive neurological conditions themselves interpret "progress" and "improvement". Person-centred conversation that values who the person is can be an effective starting point for self-management interventions in people with progressive neurological conditions. [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: To examine how line managers experience and manage the return to work process of employees on sick leave due to work-related stress and to identify supportive and inhibiting factors. Materials and methods: Semi-structured interviews with 15 line managers who have had employees on sick leave due to work-related stress. The grounded theory approach was employed. Results: Even though managers may accept the overall concept of work-related stress, they focus on personality and individual circumstances when an employee is sick-listed due to work-related stress. The lack of a common understanding of stress creates room for this focus. Line managers experience cross-pressure, discrepancies between strategic and human-relationship perspectives and a lack of organizational support in the return to work process. Conclusion: Organizations should aim to provide support for line managers. Research-based knowledge and guidelines on work-related stress and return to work process are essential, as is the involvement of coworkers. A commonly accepted definition of stress and a systematic risk assessment is also important. Cross-pressure on line managers should be minimized and room for adequate preventive actions should be provided as such an approach could support both the return to work process and the implementation of important interventions in the work environment. Implication for rehabilitation: Organizations should aim to provide support for line managers handling the return to work process. Cross-pressure on line managers should be minimized and adequate preventive actions should be provided in relation to the return to work process. Research-based knowledge and guidelines on work-related stress and return to work are essential. A common and formal definition of stress should be emphasized in the workplace. [ABSTRACT FROM AUTHOR]

Purpose: There is often a need for increased support following a stroke. This study explored what types of support are provided by different network members and what support functions are most valued. Methods: Adults with first stroke were recruited from a stroke unit and participated in in-depth interviews 8-15 months poststroke. Framework Analysis was used to build thematic and explanatory accounts of the data. Results: Twenty-nine participants took part. Main themes to emerge were as follows: the spouse was the most important provider of support; children were a relatively stable source of support, although many participants expressed reservations about worrying a child; relatives and friends typically provided social companionship and emotional support rather than on-going practical support. The only universally valued support function was the sense that someone was concerned and cared. Other valued functions were as follows: social companionship including everyday social “chit chat”; practical support provided sensitively; and, for many, sharing worries and sensitive encouragement. The manner and context in which support was provided was important: support was easiest to receive when it communicated concern, and was part of a reciprocal, caring relationship. Conclusions: As well as measuring supportive acts, researchers and clinicians should consider the manner and context of support. Implications for rehabilitation: The manner in which support was provided mattered: support was easier to receive when it communicated concern. The spouse was the most important source of all support functions; children, relatives and friends were important providers of emotional and social companionship support. Researchers and clinicians should not only focus on what support is received, but also the context (e.g., contribution, reciprocity, quality of relationship) and manner (e.g., responsiveness, sensitivity) of the support. [ABSTRACT FROM AUTHOR]

Purpose:The purpose of this study was to explore the experiences of youth with physical disabilities and clinicians who support them in their transition to post-secondary education (PSE). Most research on transition to PSE has focused on youth with intellectual disabilities while there is a lack of research on youth with physical disabilities. Methods:This study drew on 30 interviews with 20 youth with disabilities and 10 clinicians. We used Bronfrenbrenner’s ecological framework to inform our analysis. Results:Our results showed that there are several important individual skills that youth need to be successful in transitioning to PSE. Youth with disabilities experienced supports from peers and family that influence their transition to PSE. Several disability-specific issues (e.g., coping, self-care, disclosure, and accommodations) were often a barrier to transitioning to PSE. Clinicians and youth both reported that improved inter-professional collaboration and inter-agency partnerships were needed to enhance the transition experience. Societal attitudes (stigma and discrimination), policies, and the timing of transitions also influence youth’s transition. Conclusion:Applying an ecological approach helped to provide a more holistic perspective of the PSE transitions and emphasizes the need to consider more than just preparing individuals but also where they are transitioned.Implications for rehabilitationClinicians and educators should continue to promote the development of relevant life skills (e.g., self-advocacy, disclosure, and navigating public transportation) that youth need to succeed in post-secondary education.Clinicians should continue to educate and support youth regarding the process for disclosing their condition and how to request and set up accommodations in PSE.Clinicians should connect youth with disabilities to appropriate resources that can support them and continue to help them to set career goals and develop career plans.There is a critical need for improved inter-professional collaboration among clinicians providing transition services and inter-agency partnerships among high schools, disability organizations, and PSEs to enhance transition experiences for youth with disabilities. [ABSTRACT FROM PUBLISHER]

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: Qualitative research examining experiences of recovering from mild traumatic brain injury (MTBI) is limited. Findings from quantitative studies regarding predictors of persisting symptoms are inconsistent with limited attention directed to capturing broad perspectives and priorities of the wider stakeholders. More flexible research approaches may help advance the field. We used a mixed method design to generate patient perspectives of MTBI recovery, integrating these with quantitative investigation to isolate factors that might contribute to divergent MTBI outcomes. Methods: The qualitative component reported here involved semi-structured interviews with selected participants (n = 10) from the quantitative study cohort, sampling both recovered and non-recovered adult MTBI participants. Interviews focused on participants' general description and understandings of their recovery and perceptions of what helped or hindered this. Data were analyzed using general thematic analysis. Results and conclusion: Participants regardless of recovery status identified the importance of having a coherent understanding of their injury and recovery. Factors facilitating coherence included social support, validation, reassurance, accessing credible evidence-based information and having a pathway to wellness. Findings suggested that coherence could be a helpful umbrella construct worthy of examination in future MTBI research. This construct appears broad and able to cope with the complexity of individual experiences after injury. [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:The purpose of the study is to identify domains of influence on co-workers’ ability to be supportive of returning worker during the work reintegration (WR) process. Methods:An ethnographic study design was chosen involving fieldwork at four different workplaces, at an emergency care service, a waste disposal company and at two nursing homes. Qualitative methods for inquiry were used including participant observation, individual- and group interviews of 30 participants. Data were coded and analysed according to a grounded theory approach. Results:Four themes were identified related to domains of influence on co-workers’ ability to be supportive of returning worker during the WR process: (1) organisation of work and level of interaction; (2) disruption of work routines, (3) relationship with returning worker and (4) attitudes towards sick leave. Conclusion:The WR process after long-term sick leave is not only influenced by the WR’s arrangements made, but also by the co-workers’ responses to the process. Work arrangements not only affect the returning worker’s ability to return-to-work (RTW) successfully, but also the co-workers’ ability to be supportive and their ability to take active part in the process.Implications for RehabilitationThe process of WR after long-term sick leave involves interaction with co-workers.Domains of influence is in the co-workers’ perspective influencing their ability to be supportive during reintegration of a returning worker.Future WR management could benefit from integrating the conditions for co-worker support.We encourage co-workers to be involved in the RTW planning, monitoring and evaluation with particular focus on how the WR arrangements are influencing their work and their ability to be supportive. [ABSTRACT FROM PUBLISHER]