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There is a gap in research on how best to support exercise in moderate to severe MS. The objective of this study is to share perspectives of people living with MS and physiotherapists on their experiences in a randomized clinical trial of online physiotherapy vs. an active comparator. Semi-structured exit interviews were conducted with volunteer participants from the online and comparator arms of the trial, and focus groups were held with study physiotherapists. Transcripts were analyzed using reflexive thematic analysis. Perspectives from participants with MS yielded three themes: usability of their program, utility of their program, and motivation to participate. Visual and dexterity impairments limited the usability of the online program. Having an opportunity "to be pushed" was valued by participants in both trial arms. Motivation to exercise was variable, and participants desired periodic face-to-face contact with their physiotherapists. Perspectives from trial physiotherapists yielded similar and complementary findings concerning usability and utility. Participants with MS and physiotherapists found the online physiotherapy platform useful for supporting exercise, yet they identified some limitations. As the appeal of online platforms has increased since the pandemic, it will be important to consider the needs of people with moderate to severe MS. NCT03039400. People with moderate-to-severe MS and physiotherapists involved in a clinical trial found online physiotherapy useful for supporting exercise. Physiotherapists and participants using the online program desired improved platform accommodations for people living with MS with visual and dexterity impairments. Physiotherapists and people living with MS from both the online exercise program and comparator groups perceived a need for more face-to-face contact and opportunities to build therapeutic alliance. Perspectives from prescribing physiotherapists and people living with MS about supporting exercise online may have practice implications during and post-pandemic. [ABSTRACT FROM AUTHOR]

There is unprecedented opportunity to evaluate children's participation in diverse cultural contexts, to enhance cross-cultural research, advance the delivery of culturally responsive pediatric rehabilitation, and translate new knowledge on a global scale. The participation concept is complex and heavily influenced by a child's context. Therefore, effectively capturing the participation concept requires valid, reliable, and culturally sensitive participation-focused measures. This perspective paper proposes a structured process for culturally adapting measures of participation for children and youth with disabilities. Elements of the Applied Cultural Equivalence Framework and Beaton and colleagues' six-step process were used to create a guiding process for culturally adapting a Participation and Environment Measure (PEM) while drawing on two distinct cultural contexts. This process included forward and back language translations, and semi-structured cognitive interviews, to develop adapted versions of the PEM that are ready for psychometric validation. Common challenges to culturally adapting PEM content and administration are identified and methodological strategies to mitigate these challenges are proposed. The proposed process can guide rehabilitation specialists and researchers in adapting participation measures that are suitable for their culture. Such a process can facilitate scalable implementation of evidence-based tools to support participation-based practice in the rehabilitation field. The use of a systematic process can harmonize efforts by rehabilitation researchers and service providers to effectively culturally adapt pediatric participation measures to optimize its impact for culturally sensitive research and practice targeting participation. Two distinct, yet complementary, illustrative exemplars showcase the range of considerations and strategies, such as by conducting consecutive rounds of cognitive interviews, when teams use this systematic process to cultural adapt a pediatric participation measure. The systematic process outlined in this paper promotes rigor in achieving all elements of cultural equivalency, when feasible, to best ensure that the participation measure is suitable for use in the target cultural context. [ABSTRACT FROM AUTHOR]

Individuals with chronic obstructive pulmonary disease (COPD) often have mobility limitations; these may include challenges with balance and being at high risk of falling. Risk of falling can be reduced through exercise programs targeting balance; however, older adults with COPD may experience many barriers to exercise adherence. In this paper we present qualitative findings about the feasibility of a six-month home-based fall-prevention exercise program for older adults with COPD. The aim of the study is to describe the experiences of older adults with COPD who participated in a home-based fall prevention exercise program in order to determine their perceived facilitators and barriers to participation. 15 participants with COPD who had completed the six-month home-based program participated in one-on-one semi-structured interviews over the phone. Interpretive description methodology and thematic analysis were used. Two major themes emerged with respect to participants' perspectives of the intervention and facilitators and barriers to participation: program personalization based on each individual's characteristics, lifestyles, and preferences; and self-motivation and support from family, friends, and healthcare providers. Fall prevention exercise programs that are personalized and focus on providing support for older adults with COPD may help to improve adherence and reduce participants' risk of falling. Individuals with COPD often have balance problems and a high risk of falling. Fall prevention programs can improve balance, but adherence is a commonly cited challenge. Patient experiences suggest that fall prevention programs should be personalized and incorporate social support to improve adherence to fall prevention exercises. [ABSTRACT FROM AUTHOR]

This study aims to evaluate the process of implementing an evidence-based goal-setting package into five rehabilitation services across the continuum of rehabilitation. This study used a mixed methods approach guided by Medical Research Council (MRC) recommendations for conducting process evaluations, the RE-AIM framework, and the Theoretical Domains Framework (TDF). This study will evaluate the reach, adoption, implementation, and maintenance of the goal-setting package over six months. Environmental context and resources, the clinician's social and professional role and identity, social influences and clinician beliefs about goal-setting consequences and individuals' capabilities were all identified as barriers or enablers throughout the implementation process. Community rehabilitation services faced challenges implementing paper-based resources, whilst inpatient rehabilitation sites faced challenges engaging nursing staff in the interdisciplinary approach to goal-setting. Social influences were an enabler in two sites that used the case conference format to facilitate setting common goals. Clinicians in all sites continued to express difficulties implementing shared decision-making with people who had cognitive impairments or were no longer progressing in their rehabilitation. A team-based approach to implementing the goal-setting interventions centred around the case conference format appeared to be the most successful mode for implementing interdisciplinary person-centred goal-setting. The rehabilitation case conference forum can be used to facilitate teams to set interdisciplinary common goals. Rehabilitation teams should add further consideration to how they can involve clients as a member of the rehabilitation team throughout the rehabilitation process. Embedding changes into existing process and using structured templates and tools can enhance the process of goal-setting in rehabilitation. Strong leadership, dedicated facilitation, audit and feedback can enhance team's success in implementing elements of the goal-setting implementation package. [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]

Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. The objective of the present study was to explore the use of numeric pain assessment in individuals with hEDS, from a patient-centered perspective. Our analysis is based on in-depth qualitative interviews. The interviews were conducted over the phone. Our participants were patients living with hEDS (N = 35). Interviews were recorded, transcribed, and analyzed to identify factors related to their use of these pain assessment instruments. Three primary themes emerged from these data, namely, (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain. These results demonstrate the need for caution in relying exclusively on numeric pain assessment instruments. We conclude with a brief proposal for a clinical communication strategy that may help to address the limitations of numeric pain assessment that were identified in our interviews. Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. Clinicians should be aware that patients have difficulties with the Numeric Rating Scale (NRS) for at least three reasons: (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain. Clinicians should use caution in relying exclusively on NRS instruments. Clinicians may benefit from using clinical communication strategies outlined in our paper, which may help to address the limitations of the NRS that were identified in our interviews. [ABSTRACT FROM AUTHOR]

The development of a tool to track participation in activity-based therapy (ABT) for people with spinal cord injury or disease (SCI/D) was identified as a priority of the Canadian ABT Community of Practice. The objective of this study was to understand multi-stakeholder perspectives on tracking ABT participation across the continuum of care. Forty-eight individuals from six stakeholder groups (persons living with SCI/D; hospital therapists; community trainers; administrators; researchers; and funders, advocates and policy experts) were recruited to participate in focus group interviews. Participants were asked open-ended questions concerning the importance of and parameters around tracking ABT. Transcripts were analyzed using conventional content analysis. Themes reflected the Who, What, Where, When, Why and How of tracking ABT. Participants described the importance of involving hospital therapists, community trainers and individuals with SCI/D in tracking ABT to capture both subjective and objective parameters across the continuum of care and injury trajectory. Digital tracking tools were favoured, although paper-based versions were regarded as a necessity in some circumstances. Findings highlighted the importance of tracking ABT participation for individuals with SCI/D. The information may guide the development of ABT practice guidelines and support the implementation of ABT in Canada. Tracking the details of activity-based therapy (ABT) sessions and programs across the continuum of care and injury trajectory may provide important information to support the development of ABT practice guidelines and implementation strategies. Tracking objective and subjective parameters are needed to provide a comprehensive description of an ABT session and program. Clinicians and individuals with spinal cord injury or disease (SCI/D) should both be able to track ABT to accommodate all settings and types of data. Digital tracking tools, such as an app, may provide an accessible, versatile and efficient way of tracking ABT. [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]

The purpose of this paper was first to gain an in-depth understanding of the barriers and facilitators to implementing the BPS model and pain neuroscience education in the current Lebanese physical therapy health care approach and explore its acceptability. A qualitative semi-structured interview using purposive sampling was conducted with eight Lebanese physical therapists practising in different governorates. The transcribed text from the interviews was analyzed using inductive thematic analysis. Two topics were generated and constructed by the researchers: (1) "barriers to the implementation of pain neuroscience education, with subthemes including (a) "current health care approach," (b) "basic curriculum and continuing education," (c) "patients' barriers"; (2) "facilitators to the implementation of pain neuroscience education," with subthemes containing (a) "interest in the BPS model, (b) "therapeutic alliance," and (c) "motivation for future training on BPS approach." The analysis of the results showed that Lebanese physical therapists currently hold a strong biomedical view of chronic pain, assessment, and treatment. However, despite the presence of barriers and challenges, they are aware and open to consider the implementation and future training about the BPS model and pain neuroscience education in their approach. The exploration of potential barriers and facilitators to the bio-psychosocial model and pain neuroscience education implementation may provide an opportunity for better development and design of a culturally sensitive pain neuroscience education material for Arab-speaking and Lebanese physical therapists. The exploration of barriers and facilitators to the implementation of pain neuroscience education will help to improve pain education and ensure better clinical pain management. The most important barriers were the dominant characteristic of the Lebanese physical therapist's health approach, which is focused on a biomechanically oriented model, and their lack of knowledge to approach chronic pain from a biopsychosocial perspective. [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]

Purpose: The "Joint Resources – Sedentary Behavior Study" (JR-SB) revealed significant behavioral and cardio-metabolic effects of reducing daily sedentary behavior replaced by light-intensity physical activity in patients with rheumatoid arthritis. This study explores the participant perception and experiences of the intervention and impact on the participants' health, family and physical activity behavior. Materials and Methods: A mixed-methods study design, including quantitative and qualitative data, was applied. Quantitative data were collected post-intervention using a questionnaire (n = 69) evaluating experiences of participation in the intervention. By maximum variation sampling, 18 participants were recruited to three focus group interviews with discussions of intervention elements. Data from the two sub-studies were collected and analyzed separately, although integrated at the interpretation and reporting level. Results: Based on four overarching themes, results indicated participant satisfaction with the individually tailored, behavioral approach and the focus on light-intensity physical activity rather than higher intensities. Study participation had an additional positive impact on the behaviors of family and social relations. Conversely, the family motivated the participants to achieve their physical activity goals. Conclusions: The study results support the use of individually tailored and behavioral approaches to reduce sedentary behavior, increase light-intensity physical activity and improve physical abilities in patients with rheumatoid arthritis. This paper presents positive participant perception and motivation for an individually tailored, behavioural intervention that aimed to reduce sedentary behaviour replaced by light-intensity physical activity in patients with rheumatoid arthritis. The results indicate that especially the focus on light-intensity physical activity, a consistent focus on the individual's everyday life and continuous support from health professionals motivated the participants to reduce their daily sedentary behaviour – also in the long term. Involvement of participants' family members seems to have influence on their own physical activity behavior as well as on the participants' motivation for changing physical activity behavior. Together with earlier evidence, the results underpin the use of behavioural strategies to support patients with rheumatoid arthritis in achieving their physical activity goals and in improving the abilities needed to manage their everyday lives. [ABSTRACT FROM AUTHOR]

People with aphasia post-stroke are at risk for depression and social isolation. Peer-befriending from someone with similar experiences may promote wellbeing and provide support. This paper explored the views of people with aphasia and their significant others about peer-befriending. We conducted a qualitative study within a feasibility trial (SUPERB) on peer-befriending for people with post-stroke aphasia and low levels of distress. Of the 28 participants randomised to the intervention, semi-structured in-depth interviews were conducted with 10 purposively selected people with aphasia (at both 4- and 10-months post-randomisation) and five of their significant others (at 4-months). Interviews were analysed using Framework Analysis. Participants and their significant others were positive about peer-befriending and identified factors which influenced their experience: the befrienders' personal experience of stroke and aphasia, their character traits and the resulting rapport these created, the conversation topics they discussed and settings they met in, and the logistics of befriending, including planning visits and negotiating their end. Interviewees also made evaluative comments about the befriending scheme. Peer-befriending was an acceptable intervention. Benefits for emotional wellbeing and companionship were reported. The shared experience in the befriending relationship was highly valued. The lived experience of stroke and aphasia of befrienders was highly valued by people with aphasia receiving peer-befriending. Training, regular supervision, and support for befrienders with practicalities such as organising visits ensured the befriending scheme was perceived as straightforward and acceptable by befriendees. Those receiving peer-befriending would recommend it to others; they found it beneficial, especially in terms of emotional wellbeing and companionship. [ABSTRACT FROM AUTHOR]

Joubert Syndrome (JS) is a rare inherited neurodevelopmental disorder defined by a characteristic cerebellar and brainstem malformation (i.e. the molar tooth sign) and variable organ involvement. The aim of the present study was to describe functional limitations and disabilities in a large sample of adult patients with a diagnosis of JS. We administered the International Classification of Functioning (ICF) checklist to thirty-six adult Italian patients with JS or their caregivers through telephone calls. None-to-mild impairment was documented for basic cognitive and mental functions, whereas severe deficit emerged for higher-order skills and language. A mismatch between individuals' capacity for daily activity and social participation and the actual performance in these fields emerged, suggesting that adults with JS may greatly benefit from external support from the caring environment. Indeed, specific facilitators were highlighted, including communication technologies as well as family members, healthcare professionals and peers support. Mild-to-severe barriers have been identified by adult patients with JS in the domains of services, systems and policies. These findings highlight challenges and barriers for adults with JS in areas of daily functioning that may be improved by investing in rehabilitation care models that embed social support programs and policies into clinical interventions. Children with Joubert Syndrome, a child-onset rare inherited neurodevelopmental condition, are growing up and becoming adults; a life course approach in rehabilitation is needed; There is a substantial lack of information on the long-term adaptive daily functioning of children with a diagnosis of Joubert Syndrome; In this paper, the International Classification of Functioning (ICF) was applied to assess the daily functioning in people with JS; Severe deficits emerged for high-order skills and language, whereas the use of communication technologies and the engagement of family members were highlighted as key facilitators; These findings highlight the need for a change of paradigm in the care model of subjects with JS, with the embedding of social support in rehabilitation programs. [ABSTRACT FROM AUTHOR]

To explore how the information-sharing context influences how speech and language therapy (SLT) and nursing staff interact on stroke units and what they discuss. Ethnographic methodology was used, with data collected during 40 weeks of fieldwork across three inner city stroke units in the UK. Data comprised field notes collected during 357 h of participant observation and 43 interviews. Interviews were conducted with 14 SLTs, 1 SLT assistant, 24 registered nurses and 4 nursing assistants. This paper is focused on informal information-sharing. SLTs and nurses had different experiences of time and space (the temporal-spatial context) with respect to ward presence and proximity to patients, influencing how they interacted, the content of their talk and their relationships. Most interactions had the quality of interruptions, in which SLTs seized moments in between nursing tasks. Conditions were less suited to sharing information about communication than swallowing and SLTs felt more allied to other therapists than nurses. The temporal-spatial context impeded information-sharing, particularly about patients' communication needs. Consideration should be given to developing relationships between SLTs and nurses as key partners for patient care and raising the profile of communication information in ways that are relevant and useful to nursing work. Strategic waiting for opportunities to interrupt nurses and gain their attention is central to how speech and language therapists manage their need to share information informally with nurses. The small "windows in time" available for interaction influence information-sharing, with a limiting effect on information about patients' communication. There is potential to improve information-sharing between speech and language therapists and nurses by considering how the relevance of information for patient care could be made clearer. [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]

Families provide vital support to relatives with brain injury yet shoulder significant stress and anxiety with little help threatening family cohesion and rehabilitative outcomes. This paper analyses the accounts of people caring for a long-term partner with brain injury to identify coping mechanisms and support systems that enhanced well-being. Materials and method: This study used semi-structured interviews with eight participants and interpretative phenomenological analysis. Three themes are reported—"moving through denial toward acceptance"; "confronting and managing ambiguous loss"; and "becoming an expert carer". Theme one describes participants' struggles to accept the longevity of brain injury and use of strenuous care practices to deny or fight disability; this proved counterproductive and was later remedied by individuals embracing change and making adaptations. Theme two reports how participants split their partners' identities -before and after brain injury- to help grieve for the marital relationships they lost. Theme three looks at participants' development of self-reliant attitudes to caregiving due to perceived limited state help, while embracing peer support that enhanced information and emotion-based coping. Findings support therapeutic practices that help family members confront the permanence of brain injury, and target feelings of complex and unresolved grief. Future research proposals are discussed. Caregivers typically provide considerable rehabilitative support to spouses living with Acquired Brain Injury to manage the physical and psychosocial burdens of long-term disability. Therapeutic interventions should reconcile notions of hope and acceptance in order to help carers confront the permanence of brain injury and develop sustainable care practices. We recommend that interventions address feelings of unresolved grief and ambiguous loss and develop tailored support for caregivers which targets pertinent psychological concerns. [ABSTRACT FROM AUTHOR]

The purpose of the study was to understand the experiences of families in accessing government support (i.e., disability allowances and rehabilitation services) for their children with disabilities (CWDs) in Bangladesh. We employed a qualitative descriptive method of study and interviewed 27 family members of CWDs. A thematic analysis was applied to analyze data using the following access dimensions to organize themes: availability, accommodation, accessibility, affordability, acceptability, and awareness. Participants shared both positive and negative experiences across the access dimensions in accessing government support. Participants appreciated the government's effort in providing support to CWDs. In particular, disability allowances and coordinated rehabilitation services at one-stop were important for families. Further, positive attitudes, such as respect and support from providers, were reported by many families. However, a majority of participants reported a long wait time to get the disability allowance for CWDs. Participants also reported that a shortage of rehabilitation professionals in the public sector was a major concern. Finally, inaccessible infrastructure (e.g., facilities and transportation) and stigma were barriers for many participants of the study. The results suggest that the government's commitment "on paper" is yet to meet the needs of its intended beneficiaries "in practice". There is a need for policy intervention to address barriers faced by families within the context of current access pathways. Shortage of rehabilitation services and limited availability of disability allowances [negatively] affect family member's access to government-led support for their CWDs in Bangladesh. The government has increased services for people with disability significantly but there is a need for it to ensure the availability of all forms of rehabilitation and increase the quota for disability allowances to meet the needs of families. It is imperative to improve mechanisms of monitoring the commitment of enacting tangible results from policies in order to ensure equitable distribution of disability allowance and rehabilitation services. [ABSTRACT FROM AUTHOR]

To evaluate the usability and acceptability of the Mental Capacity Assessment Support Toolkit (MCAST) in healthcare settings and whether its use was associated with increased legal compliance and assessor confidence. A mixed methods convergence triangulation model was used. Multidisciplinary professionals used the MCAST during mental capacity assessments for UK hospital patients with diagnoses of stroke or acute or chronic cognitive impairment. Changes in legal compliance were investigated by comparing scores on case note audits before and after implementation of the MCAST. Changes in assessor confidence and professionals' perceptions of the MCAST's usability and acceptability were explored using surveys. Patients' and family members' views on acceptability were determined using semi-structured interviews. Data were integrated using triangulation. Twenty-one professionals, 17 patients and two family members participated. Use of the MCAST was associated with significant increases in legal compliance and assessor confidence. Most professionals found the MCAST easy to use and beneficial to their practice and patients. Patients and family members found the MCAST materials acceptable. The MCAST is the first toolkit to support the needs of individuals with communication disabilities during mental capacity assessments. It enables assessors to deliver high quality, legally compliant and confident practice. Mental capacity assessment practice needs to be improved to maximise patient autonomy, safety and well-being. The MCAST is a paper-based toolkit designed to facilitate and improve mental capacity practice in England and Wales. This study suggests the MCAST would be easy and acceptable to use in healthcare settings and could lead to improvements in assessment quality and assessor confidence. [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]

Service providers are adopting the "F-words" in practice as a strengths-based approach to childhood disability. This study aimed to gain insight into service providers' uses of the "F-words", associated barriers, and knowledge translation strategies needed to support implementation. Service providers were invited to participate in an interview after completing an online survey on their clinical implementation of the "F-words". Content analysis provided insight into use of the "F-words" and perceived barriers; and to identify knowledge translation strategies to facilitate implementation. Twenty-one service providers from nine countries participated in interviews. Applications of the "F-words" included its use as a conceptual framework, directly in practice, and in teaching/training. Barriers included conflicting attitudes, insufficient funding, language, and misalignment with organizational/government priorities. To support the adoption of the "F-words", participants recommended knowledge translation strategies including local opinion leaders, linkage and exchange, educational outreach and meetings, and distribution of educational materials. Understanding uses, barriers to use, and knowledge translation strategies will inform future directions to move the "F-words" into practice. A critical step in bridging the research-to-practice gap and encouraging more widespread adoption requires collaboration with service providers to tailor knowledge translation strategies to fit the local context. Service providers around the world are interested in the ICF-based "F-words" and are adopting them in clinical practice to support a holistic, strengths-based approach to childhood disability. While there is considerable uptake of the "F-words", service providers have experienced barriers including conflicting attitudes of families and colleagues, insufficient funding, lack of translations, and misalignment with organizational and government priorities. To further support implementation and overcome perceived barriers, service providers recommended using four knowledge translation strategies: (i) local opinion leaders; (ii) linkage and exchange; (iii) educational outreach/meetings; and (iv) the distribution of educational materials. Service providers and researchers must partner together to tailor knowledge translation strategies to the local context in order to address the needs and priorities of service providers' specific settings and bridge the gap between research evidence and practice. [ABSTRACT FROM AUTHOR]

Proximal humerus fractures are common in older adults and optimizing their outcomes following this injury can be challenging. This study explored recovery from the perspective of individuals who experience proximal humerus fracture. We conducted in-depth semi-structured interviews (n = 14) with participants (aged 45 and over) recruited from a hand clinic in London, Ontario using a purposive sampling technique. The exploratory interviews were audio-recorded, transcribed, and analyzed using interpretive description approach. Four themes emerged from the narratives of individuals: challenges of day-to-day activities, coping as you go, recapturing valued life roles, and support matters. Recovery after PHF seems relative to contexts and manifests within numerous scenarios. Based on individuals' narratives, the context produces a mosaic that contributes to unique recovery perception and experience. Awareness of the context emphasizes the complexity inherent in recovery and may guide healthcare professionals' efforts toward care for their patients. Individuals with proximal humerus fracture experience recovery as a personal and dynamic process occurring in their diverse contexts. Healthcare professionals need to recognize the significant impact of context on individuals' physical, emotional, and social life following proximal humerus fracture (PHF). A multidisciplinary treatment plan might be desirable where people with PHF and health care professionals collaborate as a whole. Building a multidisciplinary health team including healthcare professionals, peer support, and case management may remove some barriers and facilitate the transition to recovery. [ABSTRACT FROM AUTHOR]

The purpose of the study was to explore the experiences of an individual navigating life in the first year after stroke, with attention to the influence of health professionals on adjustment. In-depth interviews were completed at regular intervals with an individual in rural Australia. This longitudinal approach supported the exploration of views over time. Interview transcripts were coded and analysed using strategies consistent with constructivist grounded theory methods. Findings are presented as an instrumental case study. The experience of stroke was one of adjustment to a new reality and of an altered and evolving concept of self: captured within the themes of fragmentation, loss, and reconstruction. Self-efficacy emerged as a driver in the adjustment process. Interactions with health professionals influenced adjustment and impacted on conceptualisations of self and self-efficacy. Adjustment to stroke necessitated a reconceptualization of self. Relationships and interactions with others emerged as potential facilitators. For health professionals working with people after stroke, knowledge of the adjustment process and attention to practices that affirm personhood and enhance self-efficacy have the potential to facilitate long term outcomes. Processes linked to adjustment are represented visually to guide conceptual understandings and facilitative actions. All interactions with health professionals, including casual or ad hoc interactions, have the potential to influence adjustment after stroke. Health professionals who interact in ways that recognise personhood may have an especially positive influence on processes linked to adjustment. Giving time to listen to personal narratives and reflections may assist with sense-making and support the process of reconceptualising self after stroke. Through bidirectional sharing of experience and ideas, health professionals can facilitate the experience of self-efficacy. [ABSTRACT FROM AUTHOR]

To better understand and visualise how and why mothers' and service providers' expectations for therapy can change over time spanning their journeys and careers in the paediatric rehabilitation system. Narrative analysis was used to construct two parallel collective stories that illustrate and explain phases and turning points of developing expectations. Five mothers and nine service providers participated in interviews discussing their expectations when new and more experienced with therapy. Each collective story had five chapters illustrating how expectations became more relational, controllable, and informed. For mothers, the chapters were: (1) expecting therapy to be a saviour; (2) being turned away and alone; (3) expecting to advocate from necessity; (4) finding new solutions in the environment; and (5) expecting to combine mother and service provider expertise. For service providers, the chapters were: (1) expecting to rescue and fix; (2) searching for an alternative sense of professional worth; (3) expecting to lose control; (4) being the authentic self before expected self; and (5) expecting the unexpected. Mothers' experiences with feeling alone and learning ways to modify their child's environments, and service providers' experiences with feeling inadequate and embracing authenticity, were essential to the developmental trajectories of expectations. Mapping expectations for therapy on a line graph shaped as a wave shows promise in reflecting the developmental trajectory of mothers' and service providers' expectations over time. Service providers should become aware of how to work with three distinct groups of mothers as determined by the phase of expectations for therapy they are currently experiencing (i.e., hyped, disillusioned, or enlightened). Therapy programmes can optimise expectations for therapy through redesigns that emphasise elements of networking, self-compassion, ethics, and authenticity. [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]

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]

To explore if and how Parkinson's disease dance class participation and public performance contributes to perceptions of wellbeing. A qualitative design using audio-recorded one-on-one semi-structured interviews with five class participants and three teachers/volunteers from two metropolitan Dance for Wellbeing class locations. Data were inductively thematically analysed by three researchers. Five themes illustrated the experience of dance class and performance for people with Parkinson's Disease: 1) 'the enabling learning environment'; 2) 'physical benefits from class participation; 3) 'mental/psychological benefits from class participation'; 4) 'social benefits from class participation; 5) 'sense of self and life engagement from class participation'. Themes 4 and 5 in particular were considered to be 'magnified by public performance', providing an opportunity for solidarity within the group and a supportive avenue for "coming out" and living publicly with the PD diagnosis. Dance performance magnifies health and wellbeing experiences of people with Parkinson's disease when part of an enabling, inclusive and emotionally and physically safe learning dance class environment. Elements of holistic benefits, as well as the fun and playful nature of the experience may be important elements to consider for motivation, recruitment and retention in this population. Rehabilitation professionals should consider the use of dance class as an art-based activity that has a holistic therapeutic benefit. Flexible and fun environments are constructive for dancers to sustain attendance and interest. Rehabilitation professionals can be cognisant of the impact of public dance performance as 'coming out' with Parkinson's Disease. [ABSTRACT FROM AUTHOR]

Although the challenges encountered by parents of children on the autism spectrum during the intervention process have garnered scholarly attention, how parents subjectively review those challenges and construct meanings of their experiences remained underexamined. By applying the narrative analysis framework, we investigated the lived experiences of parents of children on the autism spectrum regarding challenges they faced in the intervention process, along with the meanings of those experiences that they constructed in the sociocultural context of mainland China. We purposively sampled 16 parents to narrate their experiences following semistructured interviews. Each participant had one child who had participated in autism intervention for more than two years. The narrative analysis revealed that parents experienced a series of challenges imposed by structural barriers in the intervention process, which resulted in psychological distress and negative perceptions of their parental identities. Albeit susceptible to those adversities, the parents actively constructed new meanings of parenthood and their children's situations through reflexive dialogues. Our results indicate the essential role of meaning-oriented coping in helping parents with children on the autism spectrum to mitigate the negative influence of challenges on their parental identity, strengthen their parent–child relationships, and readjust their priorities for intervention. The role of encouraging new meanings through reflexive dialogues was found to be particularly important among parents with children on the autism spectrum to cope with the challenges they faced in the intervention process. New meanings assigned can mitigate the negative impact of challenges on parents' parental identity, strengthening their parent-child relationships, and readjusting their priorities for intervention within the Chinese socio-cultural context. It is crucial for social workers and other practitioners to support parents in mainland China by facilitating them to assign new meanings to the challenging situations. It is important for social workers and other practitioners to encourage parents to cultivate inner strengths and self-value to support their children on the autism spectrum. [ABSTRACT FROM AUTHOR]

To use stories about mothers and service providers negotiating expectations for therapy to illuminate processes contributing to power differences within partnerships. This narrative study presented stories from three mothers and three service providers. Stories were co-constructed between participants and researchers and analyzed using narrative analysis. Building on An and Palisano's (2014) Model of Family-Professional Collaboration, stories were organized into the stages of goal setting, planning, and doing therapy. Each story illuminated a process unique to that story that can redistribute power between mothers, service providers, and therapy environments while negotiating expectations: protecting sacred issues, facilitating knowledge exposure, filling voids/vacuums, recognizing cultural conditioning, re-discovering eclipsed roles, and connecting relay teams. We propose including three additional strategies to An and Palisano's model to increase the readiness of mothers and service providers to negotiate expectations for therapy and collaborate fully as the model intends: 1) exploring power-sharing conversations; 2) looking for social context clues; and 3) adopting a humility stance. Information on the six illuminated processes can help structure a client story grounded in optimal negotiation of expectations and equal partnerships. Knowledge of diverse stories about mothers and service providers negotiating expectations for therapy can be a resource to guide actions in related situations. Leaving the topic of expectations for therapy implicit or unchallenged increases the risks that negotiations remain unbalanced and unproductive. Service providers may enhance collaboration with mothers in paediatric rehabilitation by exploring power-sharing conversations, looking for social context clues, and adopting a humility stance. [ABSTRACT FROM AUTHOR]

To investigate the impact of missing data and imputation with the response function (RF) approach on bias and precision of disability estimates as well as reliability of scale of WHO Disability Assessment Schedule 2.0. Data were collected by face-to-face interviews and self-report surveys from 284 respondents with low back pain. Hypothetical datasets were created by using person and item parameters of real data. A simulation study was devised to assess the ability parameters and reliability measures on incomplete and imputed datasets. Rasch model was used to evaluate latent trait levels. Imputation was carried out using the response function method. Almost the same level of bias and MSE was reached. While the missing rate increases, the Person separation index slightly reduced, still exceeded 0.94 and Cronbach alpha values have similar mean values of 0.99 with larger variations. After deletion of four items of "work or school activities" in domain 5, reliability measures reduced the lowest. Construct validity is preserved. Problems regarding the compliance of the items with the target group still persist. When researchers encounter missingness in data collected with WHODAS 2.0, the response function can be usefully implemented to impute missing values to improve the reliability of disability level estimates. The Turkish version of the 36-item WHODAS is reliable and valid for assessing health and disability status in patients with low back pain. A critical issue is a systematic nonresponse was highly observed in items related to "work/school life activities" which are allowed to be skipped and excluded from the scoring according to WHODAS 2.0 training manual. Imputation of missing values within four items of "work or school activities" in domain 5 using the response function approach showed satisfactory reliability for the estimation of disability in adults with low back pain. This study showed missing data imputations with response function can be implemented by a statistician as contribute to a missing data management process better tailored to clinicians' interpretations. [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]

Explore the experiences of couples engaging in a positive psychology intervention post-stroke (ReStoreD: Promoting Resilience after Stroke in Dyads). This is a secondary analysis of qualitative data collected following an 8-week self-administered dyadic positive psychology intervention (Clinical Trial number: NCT03335358). Participants included dyads consisting of one partner who had a stroke at least three months prior and their cohabiting partner. Couples had to be community-dwelling and one or both had to report depressive symptoms. A thematic analysis was conducted on semi-structured feedback interviews from 26 dyads (n = 77 interviews). Two primary themes with multiple secondary themes were identified, depicting the experiences of couples post-stroke while engaging in the ReStoreD intervention. Primary and secondary themes included: changes in self (learning about the self, building new coping strategies, and acting with intention) and changes in the relationship (awareness of spouse, spending more positive time together, being more intentional in the relationship, and increased/improved communication). Individuals and couples post-stroke often experience negative mood changes, poor health outcomes, and decreased participation. Implementation of ReStoreD activities in the clinical setting can be a valuable and impactful way to encourage and foster positive experiences and re-engagement post-stroke. Through dyadic positive psychology intervention activities, rehabilitation professionals can build upon existing strengths and resources to encourage couples to increase their awareness and development of positive coping strategies as individuals and couples. Positive psychology intervention activities can be implemented by rehabilitation professionals at inpatient and outpatient settings through self-directed, low-cost, and time-efficient strategies to increase engagement in positive activities at home. [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]

Investigation into dysphagia, dysphonia and laryngeal hypersensitivity after whiplash is limited, offering minimal insight into specific features and impact. This study aimed to explore these symptoms. A qualitative interpretive description design was used. Eleven participants with chronic Whiplash Associated Disorder and self-reported swallowing, voice and/or throat-related problems completed baseline symptom questionnaires and were offered a videofluroscopic swallow study to investigate baseline swallowing biomechanics. Semi-structured interviews were conducted to explore features of swallowing, voice and laryngeal sensory complaints and analysed using thematic analysis. There were high baseline levels of self-reported neck, pain- and throat-related disability and psychological distress. There was no evidence of baseline deficits in swallow biomechanics. Thematic analysis revealed 5 themes: (1) A range of features of dysphagia and dysphonia exist after whiplash with varied clinical course; (2) Activity and participation in swallow and voice activities have changed; (3) There are psychological and emotional impacts; (4) Features of laryngeal hypersensitivity co-exist and (5) There are barriers to management. Swallow, voice and laryngeal sensory problems after whiplash were described, with impacts on quality of life and barriers to management. These insights broaden understanding of post-whiplash sequalae, indicating the need for better detection. Dysphagia, dysphonia and laryngeal hypersensitivity are under-recognised consequences of whiplash. Individuals presenting with dysphagia, dysphonia and laryngeal sensory symptoms after whiplash experience significant implications to wellbeing, activity and participation. Improved understanding of these symptoms may facilitate better detection and subsequent referral to speech-language pathology. Greater understanding into the functional and psychosocial implications of these symptoms may guide more effective post-whiplash assessments and informed rehabilitation. [ABSTRACT FROM AUTHOR]

Interprofessional communication (IPC) in rehabilitation is important for patient care yet it has been shown to be variable and challenging. Existing research does not address the complexity of IPC in this setting. Understanding the influence of contextual factors on IPC may guide improvements to increase the effectiveness of communication within interprofessional teams. From July 2020 to February 2021 semi-structured interviews were conducted with 24 healthcare professionals across Australia and New Zealand. Cultural Historical Activity Theory provided a guiding theoretical and analytical framework for this qualitative study. Participants described engaging in IPC through evolving interactions, piecing together information that underpinned patient care. Meetings occurred frequently, however communication extended well beyond formalised interactions, often requiring individuals to balance clinical workload with communication tasks. IPC reportedly relied on communication tools, however navigating information from multiple sources was demanding. Our results indicate that IPC contributes significantly to the workload of healthcare professionals in rehabilitation. IPC was integral in the provision of cohesive patient care, however it proved time consuming, effortful and at times frustrating and potentially erroneous. Our findings promote the need for rigorous examination of communication practices to ensure they are meeting the needs of an increasingly interprofessional workforce. Healthcare professionals should recognise that time spent communicating within their team is a legitimate and important part of patient care. Rehabilitation teams should consider how they allocate resources for communication tasks. Teams should reconsider how they can use communication more effectively to save time by reducing repetition and errors. [ABSTRACT FROM AUTHOR]

Although allied health services are important adjuncts to medical care for people with myasthenia gravis (MG), the underutilisation of these services is not well understood within the Australian context. It is critical to explore patients' perceptions to develop services that meet consumer needs. This study, therefore, sought to obtain insight into MG patients' perspectives and experiences, in addition to the outcomes, of accessing allied health services. Thirteen Australian adults with MG participated in semi-structured interviews. Qualitative analysis was conducted inductively using thematic content analysis. Four themes were identified: (1) missed opportunities and unmet care needs were common, due to frequent patient–provider communication breakdowns and a lack of referral protocols, (2) personal factors – patient self-advocacy influenced their perceived need, with some lacking confidence to seek help, (3) perceived benefit and health provider capacities – most valued allied health despite differing perceptions of health professionals' attitudes, skills, and willingness to learn, and (4) a resultant fragmentation of care between services was universal. Findings highlighted a need for clear referral pathways, coordinated multidisciplinary care, improved access to community-based services and education for allied health professionals about MG. Adults with myasthenia gravis (MG) report a lack of referral pathways to allied health services, leading to unmet needs and fragmented care. Although there is a perceived benefit to allied health care, experiences are impacted by health provider capacity and attitudes. There needs to be an overall shift towards multidisciplinary care for people with MG, and the development of clear referral pathways. Specific education about MG should be available for allied health professionals to improve their knowledge and skills in treating this population. [ABSTRACT FROM AUTHOR]

Supported self-management (SSM) is an important part of adapting to life after stroke however it is a complex concept. It is unclear what SSM in stroke consists of or how stroke survivors, families, and clinicians can most effectively work together to support person-centred self-management. In this study, we aimed to explore what was most important in making SSM work in community stroke rehabilitation. We conducted a Q-methodology study with stroke survivors (n = 20), community-based stroke clinicians (n = 20), and team managers (n = 8) across four health boards in Scotland, United Kingdom. Participants ranked 32 statements according to their importance in making SSM work. Factor analysis was used to identify shared viewpoints. We identified four viewpoints: (i) A person-centred approach to build self-confidence and self-worth; (ii) Feeling heard, understood, and supported by everybody; (iii) Preparation of appropriate resources; and (iv) Right thing, right place, right time for the individual. Important across all viewpoints were: a trusting supportive relationship; working in partnership; focusing on meaningful goals; and building self-confidence. Differing views exist on what is most important in SSM. These views could be used to inform quality improvement strategies to support the delivery of SSM that considers the preferences of stroke survivors. Clinicians should be aware of their own viewpoint of supported self-management and consider how their perspective may differ from stroke survivors' and colleagues' perspectives of what's important to support self-management. Working in partnership with stroke survivors plus developing a trusting and supportive relationship with them are core components of supporting self-management in the longer term after stroke. Building a sense of self-worth and self-confidence, a focus on meaningful goals, training and support for staff, and tailoring support to people's needs at the right time are important considerations for supporting longer-term engagement in self-management. [ABSTRACT FROM AUTHOR]

Poorly fitting prosthetic sockets contribute to decreased quality of life, health, and well-being for persons with amputations. Therefore, improved socket fit is a high clinical priority. In this study, we describe the design and testing of a novel sensor system that can be incorporated into a prosthetic socket to measure distal end weight bearing in the socket and can alert a prosthesis user if poor socket fit is suspected. We present the results of testing this device with three Veterans who were new prosthesis users and three Veterans who were experienced prosthesis users. We collected sensor data during walking trials while participants wore varying numbers of sock plies and qualitative feedback on the design of the socket fit sensor system. For analysis, peak sensor measurements during walking cycles were identified and combined with socket fit data (i.e., a clinician-determined level of "good," "too tight," or "too loose" and the number of sock ply worn each trial). We found consistent relationships between peak sensor measurements and socket fit in our sample. Also, all users expressed an interest in the device, highlighting its potential benefits during early prosthesis training. Ensuring socket fit is challenging for many prosthesis users. A novel wearable sensor system can be used to identify socket fit issues for some prosthesis users. This type of system could be most helpful for new prosthesis users and those with sensory and cognitive challenges. [ABSTRACT FROM AUTHOR]

The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. Participants (n = 162) were aged 18–74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP. Adults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed. Adults were not satisfied with the availability or quality of physiotherapy services received. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. There is a need to develop physiotherapy services from a life-span perspective for adults living with CP. [ABSTRACT FROM AUTHOR]

Identify ethical issues that arise in the coordination of return-to-work (RTW) among employees on sick leave due to common mental disorders (CMDs). 41 semi-structured individual interviews and one focus group interview with stakeholders (n = 46) involved in RTW: employees on sick leave due to CMDs, coordinators and physicians at primary health care centres, managers, representatives of the Swedish social insurance agency and occupational health services. A six-step thematic analysis focused on the ethical values and norms related to autonomy, privacy, resources and organization, and professional values. Five themes were identified: (1) autonomous decision-making versus the risk of taking over, (2) employee rights versus restrictions to self-determination, (3) respect for employee privacy versus stakeholders' interests, (4) risk of unequal inclusion due to insufficient organizational structure and resources, (5) risk of unequal support due to unclear professional roles and responsibilities. The main ethical issues are the risks of unequal access to and unequal support for the coordination of RTW. For the fair and equal provision of coordination, it is necessary to be transparent on how to prioritize the coordination of RTW for different patient groups, provide clarity about the coordinator's professional role, and facilitate ongoing boundary work between stakeholders. Unfair and arbitrary criteria for inclusion to the coordination of RTW implicate risks of unequal access for the employee on sick leave due to CMDs. Unclear professional roles and responsibilities among stakeholders in the coordination of RTW implicate risks of unequal support for the employee on sick leave due to CMDs. Coordination of RTW should be transparently prioritized on policy and organisational levels to secure fair and equal inclusion. The coordinator's professional role should be clearly defined to facilitate boundary work between stakeholders and improve the competence around the coordination of RTW. [ABSTRACT FROM AUTHOR]

To understand the factors influencing participation in community-based gym exercise for young adults with cerebral palsy (CP). A qualitative study using semi-structured interviews was conducted. Interviews were completed with 39 young adults with CP (15–30 years, GMFCS I–IV) following a peer-supported, gym-based exercise program called FitSkills. "Finding what works for me" was the overarching theme. Through their gym experiences, young adults with CP identified four interrelated main themes that influenced whether gym participation "worked" for them, or not: (i) psychological factors, (ii) a "social" participation context, (iii) organisational and logistical support, and (iv) cost. The social context of FitSkills was perceived to positively influence psychological health outcomes and attenuate perceived barriers to participation. Organisational support facilitated their initial attendance, while logistical effort and cost affected ongoing or future gym participation. Social involvement plays a critical role in positive participation experiences in community exercise settings for young adults with CP. Clinicians supporting exercise participation for this group should prioritise intervention strategies that promote social engagement and mental wellbeing. Collaboration between clinicians, community leisure organisations, and funding bodies may be essential to overcome logistical and financial barriers during the transition to adulthood. The main factor influencing the attendance, involvement, and ongoing exercise preferences of young adults with cerebral palsy (CP) was the social context of the participation experience. Altering the social environment through peer-mentoring can facilitate participation in the gym. Young adults with CP consider mental wellbeing to be an important motivator and outcome of gym-based exercise participation. Mental wellbeing should be prioritised for health promotion for this group. Collaboration between recreation organisations, health services, clinicians, and consumers to address logistical and financial factors can facilitate positive physical activity participation experiences in community settings. [ABSTRACT FROM AUTHOR]

Congenital visual impairment and additional disabilities (VIAD) may hamper the development of a child's communication skills and the quality of overall emotional availability between a child and his/her parents. This study investigated the effects of bodily-tactile intervention on a Finnish 26-year-old mother's use of the bodily-tactile modality, the gestural and vocal expressions of her one-year-old child with VIAD, and emotional availability between the dyad. Mixed methods were used in the video analysis. The child's and his mother's bodily-tactile and gestural expressions were analyzed using a coding procedure. Applied conversation analysis was used to further analyse the child's emerging gestural expressions in their sequential interactive context. Emotional availability scales were used to analyze the emotional quality of the interaction. The results showed that the mother increased her use of the bodily-tactile modality during the intervention, especially in play and tactile signing. The child imitated new signs and developed new gestural expressions based on his bodily-tactile experiences during the intervention sessions. His vocalizations did not change. Emotional availability remained stable. The case study approach allowed the in-depth investigation of the components contributing to the emergence of gestural expressions in children with VIAD. Bodily-tactile modality may compensate for the absence of a child's vision in child–parent interactions. Bodily-tactile early intervention may be effective in guiding caregivers to use bodily-tactile modality in interacting with their child with VIAD. Caregivers' use of bodily-tactile modality in interactions may contribute to the development of gestural expressions in a child with VIAD. The use of bodily-tactile modality in interactions may improve the emotional connection between children with VIAD and their caregivers. [ABSTRACT FROM AUTHOR]

A traumatic brachial plexus injury (BPI) has life-changing consequences for patients and their families. Despite advancements in treatments final outcome is unpredictable depending on factors including time to treatment, injury severity, neural regeneration, and available interventions. The final outcome may not be seen for up to four years. This study aimed to explore the impact of uncertainty on people with a traumatic BPI. Secondary qualitative analysis was conducted on data from a study exploring outcomes important to patients with a traumatic BPI. Data from semi-structured interviews with adult traumatic BPI patients (n = 13) were analyzed using reflexive thematic analysis. Three major themes were identified in the qualitative data: (i) "I don't know what happened to me," focused on uncertainty in diagnosis. (ii) "I went to work one day... and then it all changed" centered around uncertainty in the future. (iii) Coping with uncertainty. The results illustrate that people with a traumatic BPI face uncertainty regarding diagnosis, prognosis, and surrounding their roles in the future. Individuals respond to uncertainty in different ways and this needs to be understood by health care professionals. Health professionals should consider uncertainty in all their contacts with people who have experienced a traumatic brachial plexus injury. People with a traumatic brachial plexus injury experience uncertainty in different ways therefore education and information given may be optimized if tailored to the individual rather than generic. Increasing awareness of the injury and its presentation in non-specialist acute care clinicians may accelerate diagnosis and reduce initial uncertainty. Acknowledging the presence of uncertainty is important during the shared decision-making in brachial plexus injuries. [ABSTRACT FROM AUTHOR]

Neuromuscular disorders (NMD) encompasses a wide range of conditions, with respiratory weakness a common feature. Respiratory care can involve non-invasive ventilation (NIV) resulting in fewer hospital admissions, a lower mortality rate and improved quality of life. The aim of this study was to explore the 'lived experience' of NIV by people with NMD. Interpretive Phenomenological Analysis (IPA) with semi-structured, face to face interviews with 11 people with NMD, using bi-level positive airway pressure for NIV for more than 12 months. Three themes were interpreted: (i) Alive, with a life; (ii) Me and 'that' machine; and (iii) Precariousness of this life. NIV enabled hope, independence and the opportunity to explore previously perceived unattainable life experiences. Yet, participants felt dependent on the machine. Furthermore, practical considerations and fear of NIV failure created a sense of precariousness to life and a reframing of personal identity. The findings highlight the broad ranging positive and negative effects that may occur for people with NMD when using this important therapy. Ongoing non-judgemental support and empathy are required from health professionals as the use of NIV challenged concepts such as 'living life well' for people with NMD. Neuromuscular disorders may result in respiratory weakness requiring non-invasive ventilation (NIV). When prescribed early, NIV can results in fewer hospital admissions, a lower mortality rate and improved quality of life. The relationship of people with NMD with their NIV machine is complex and impacts on and requires adjustment to their identity. NIV users acknowledged that NIV provided hope but simultaneously recognised the precariousness of NIV on their life. In order to better support people with NMD healthcare professionals need to better understand how the physical, psychological and social implications of NIV affect an individual's life. [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]

Facial weakness and its functional consequences are an often underappreciated clinical feature of facioscapulohumeral muscular dystrophy (FSHD) by healthcare professionals and researchers. This is at least in part due to the fact that there are few adequate clinical outcome measures available. We developed the Facial Function Scale, a Rasch-built questionnaire on the functional disabilities relating to facial weakness in FSHD. A preliminary 33-item questionnaire was created based on semi-structured interviews with 16 FSHD patients and completed by 119 patients. For reliability studies, 73 patients completed it again after a two-week interval. Data were subjected to semi-automated Rasch analysis to select the most appropriate item set to fit model expectations. This resulted in a 25-item unidimensional, linear-weighted questionnaire with high internal consistency (person separation index = 0.92) and test–retest reliability (patients' locations ICC = 0.98 and items' locations ICC = 0.99). Good external construct validity scores were obtained through correlation with the Communicative Participation Item Bank questionnaire, examiner-reported Facial Weakness Score and facial weakness subscale of the FSHD evaluation score (respectively r = 0.733, r = −0.566, and r = 0.441, all p < 0.001). This study provides a linear-weighted, clinimetrically sound, patient-reported outcome measure on the functional disabilities relating to facial weakness in FSHD, to enable further research on this relevant topic. Facial weakness and its functional consequences are an often underappreciated clinical feature of facioscapulohumeral muscular dystrophy (FSHD), both in symptomatic treatment and in research. To enable the development and testing of therapeutic symptomatic interventions for facial weakness, clinical outcome measures are required. This study provides a linear-weighted, clinimetrically sound, patient-reported outcome measure on the functional disabilities relating to facial weakness in FSHD patients. [ABSTRACT FROM AUTHOR]

Post-stroke survivors report that feedback helps to increase training motivation. A wearable system (M-MARK), comprising movement and muscle sensors and providing feedback when performing everyday tasks was developed. The objective reported here was to create an evidence-based set of upper-limb tasks for use with the system. Data from two focus groups with rehabilitation professionals, ten interviews with stroke survivors and a review of assessment tests were synthesized. In a two-stage process, suggested tasks were screened to exclude non-tasks and complex activities. Remaining tasks were screened for suitability and entered into a categorization matrix. Of 83 suggestions, eight non-tasks, and 42 complex activities were rejected. Of the remaining 33 tasks, 15 were rejected: five required fine motor control; eight were too complex to standardize; one because the role of hemiplegic hand was not defined and one involved water. The review of clinical assessment tests found no additional tasks. Eleven were ultimately selected for testing with M-Mark. Using a task categorization matrix, a set of training tasks was systematically identified. There was strong agreement between data from the professionals, survivors and literature. The matrix populated by tasks has potential for wider use in upper-limb stroke rehabilitation. Rehabilitation technologies that provide feedback on quantity and quality of movements can support independent home-based upper limb rehabilitation. Rehabilitation technology systems require a library of upper limb tasks at different levels for people with stroke and therapists to choose from. A user-defined and evidence-based set of upper limb tasks for use within a wearable sensor device system have been developed. [ABSTRACT FROM AUTHOR]

Patient values, preferences, and circumstances are critical to decision-making in both patient-centred and evidence-based practice models of healthcare. Despite the established importance of integrating these patient attributes, the ways they are elicited in rehabilitation remain unclear. This study aimed to explore how health professionals elicit and share patients' 'values', 'preferences', and 'circumstances', and what they understand by the terms. This exploratory qualitative descriptive study used interviews with 13 clinicians from interprofessional teams in inpatient neurological rehabilitation. Data were analysed using a general inductive approach. Participants understood 'values' to mean what is important and meaningful; 'preferences' as likes/dislikes and choices; and 'circumstances' as the social, physical, and environmental context surrounding the person. Formal and informal strategies were used to gather information directly from patients or indirectly from other sources. The processes of eliciting and communicating this information were influenced by relationships and relied on contributions from many people. Elicitation involved a flexible approach tailored to the individual and considering each unique context. The strategies used and the approach used to implement these strategies were both essential to eliciting patient values, preferences, and circumstances in neurological rehabilitation. These findings offer insights into the practices of interprofessional rehabilitation clinicians. Eliciting patient values, preferences, and circumstances involves a combination of strategies and approaches that are applied gradually throughout the continuum of rehabilitation. These processes are flexible, and strategies should be tailored to individual patients/families and phases of rehabilitation. Clinicians should be attentive to informal opportunities to gather valuable information throughout rehabilitation. Establishing positive relationships and using effective communication is foundational to these processes. [ABSTRACT FROM AUTHOR]

To assess the change in individual outcomes for people with disability and complex needs after moving into newly built, individualised apartments in the community. People with disability (neurological disorder or cerebral palsy) and complex needs (n = 15, aged 18–65 years) completed quantitative self-report measures over two time-points (pre-move and 6–24 months post-move). Pre-move living arrangements included group homes, residential aged care, private rentals, and living with parents. Post-move living arrangements were individualised apartments built for people with disability. Health, wellbeing, community integration, and support needs were compared across pre- and post-move timepoints. Paired sample t-tests showed significant improvements consistent with large effects in wellbeing (p = 0.031, Eta2=0.29) and community integration (p = 0.008, Eta2=0.41), particularly home integration, and a trend towards improved health (p = 0.077, Eta2=0.21). A Wilcoxon signed rank test demonstrated a trend towards reduced support needs (z= −1.941, p = 0.052) consistent with a medium effect (r = 0.35) and an average decrease of 2.4 support hours per participant per day. Well-located housing with appropriate design, technology and support provision makes a positive contribution to wellbeing, community integration, and health for people with complex disability. People with disability who move into individualised apartments experience significant positive change in health, wellbeing, and participation. Findings highlight the benefits of housing that foster independence and enable personal choice and control. Evidence suggests that investment in appropriately designed and well-located housing has positive outcomes for people with disability. Evidence collected within this outcome framework has the potential to ensure models of housing and support that are responsive to the diverse and changing needs of people with disability. [ABSTRACT FROM AUTHOR]

To describe patients' perceived and expected recovery 1 year after aneurysmal subarachnoid hemorrhage (aSAH). Semi-structured interviews were conducted with 16 persons 1 year after aSAH. Inductive manifest qualitative content analysis was used. The analysis resulted in two categories and seven subcategories. The category "A spectrum of varying experiences of recovery" includes four subcategories describing physical recovery, mental recovery, alterations in social life, and perceived possibilities to return to normality. Some informants felt that life was almost as before, while others described a completely different life, including a new view of self, altered relationships, not being able to return to work, and effects on personal finances. The category "A spectrum of reflections and expectations of recovery" comprises three subcategories depicturing that expectations of recovery were influenced by existential thoughts, describing what they based own expectations of recovery on, and how expectations from others influenced them. aSAH was perceived as a life-changing event. The changes impacted on informants' view of self and relationships, and they perceived new barriers in their living conditions. Lack of information on expected recovery was expressed and expectations of recovery were at times unrealistic. Contracting an aneurysmal subarachnoid hemorrhage (aSAH) is a life-changing event with possible impact on a variety of areas in daily life. There is a need for improved information to aSAH survivors and their significant others on the course of the recovery and possible long-term consequences. aSAH survivors may need assistance to balance unrealistic expectations on recovery. [ABSTRACT FROM AUTHOR]

Evidence of effective strategies to improve access to assistive technology (AT) like prostheses is limited, especially in rural and remote areas of low- and middle-income countries where unmet needs are the greatest. This study aimed to identify barriers and facilitators to accessing prosthetic services in rural areas of western Nepal and explore strategies to improve access from the perspective of local stakeholders. Semi-structured interviews were conducted with 13 service providers and consumers. Barriers and facilitators of access were highlighted and potential solutions to overcome access barriers were explored using thematic analysis of transcripts. Six themes concerning barriers and facilitators arose: awareness and literacy of prosthetic services, attitudes and belief systems, financial supports, geographical access, health system and referral processes, as well as service provider capacity and regulation. Six themes regarding potential solutions were also identified: awareness campaigns, procurement pathways, referral pathways, subsidised and shared costs of AT, professional support networks and development opportunities, as well as task shifting and sharing. While facilitating interventions support access to prosthetic services, they remain insufficient to overcome several barriers that continue to inhibit this access. Nevertheless, real opportunities to alleviate barriers and address the unmet need exist and must be explored. It is advised that rehabilitation professionals, particularly those delivering prosthetic services in rural and remote settings of Nepal, consider piloting alternative service delivery strategies which utilise resources accessible to them in order to overcome several existing barriers to AT access e.g., task shifting. Rehabilitation professionals in Nepal have the opportunity to support others working in low-resources settings to expand professional development opportunities through online and digital platforms. Gathering and sharing data on the current state of prosthetic and AT service delivery within Nepal is highly valuable to the development of the prosthetic rehabilitation profession and ultimately equity in access to appropriate AT. Proposed interventions identified within this study can potentially serve to guide stakeholders in rural and remote settings of other LMICs in developing strategies to overcome barriers to AT access suitable to their context. [ABSTRACT FROM AUTHOR]