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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]

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]

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]

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]

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]

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]

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

Objective: In the knowledge base examining experiences of childhood brain injury, the perspectives of children with brain injury are notably lacking. This failure to represent the voices of pediatric clients has resulted in an incomplete knowledge base from which to inform evidence-based rehabilitation practice. In this paper, we examine why the perspectives of children with brain injury are rarely sought and propose a new way forward. Methods: We draw upon current evidence and practices in related fields and present an exemplar from an in-progress qualitative arts-based research project with children with brain injury. Results: Assumptions ingrained in research practices, particularly those surrounding the capacity of 'doubly vulnerable' children with brain injury to produce knowledge, have resulted in the relative exclusion of this group from research that concerns them. For the field to evolve, research practices must value children's first-hand accounts, engage them in co-constructing knowledge about their lives, and invite methods that meet their interests and abilities. Conclusion: By reframing how we think about the capacities of children with disabilities and shifting our research practices to include children with brain injury as knowledgeable participants, it becomes possible to expand the knowledge base upon which clinical rehabilitation practices are built. Current research practices preclude 'doubly vulnerable' pediatric populations, including children with brain injury, from actively contributing to research that concerns them. As a result, the perspectives of children with brain injury are virtually absent from research, rendering the evidence base upon which rehabilitative practices are built incomplete. Reframing how we think about the capacities of children with brain injury can shift how we engage with them, both in research and clinic, and may subsequently impact the knowledge available to us. Implications for client-centred rehabilitation are discussed, including the need to understand children as capable of insight into their own experience, as able to contribute to a more complete understanding of the health phenomena that affect them, and as invaluable and active participants in research and clinical care. [ABSTRACT FROM AUTHOR]

Purpose:The construct validity, test–retest reliability, and measurement error of the Arm Function in Multiple Sclerosis Questionnaire (AMSQ) were examined. Additionally, the influence of administration-method on reliability and measurement error was investigated. Method:112 Dutch adult MS-patients from an academic- and a residential care-facility participated. Questionnaires were administered on paper, online or as interview, and patients performed several performance tests. Construct validity was assessed by testing pre-defined hypotheses. Reliability was assessed using Intraclass Correlation Coefficients (ICCs), Standard Error of Measurements (SEMs) and Smallest Detectable Changes (SDCs). Results:For construct validity (N = 105) 9 of 13 hypotheses were confirmed (69%). As expected, the AMSQ showed moderate to strong relationships with the instruments measuring similar constructs. The test–retest reliability coefficient was 0.96 (95% Confidence Interval 0.94–0.97); SEM was 6.3 (6.3% of scale range); SDC was 17.5 (on a sale from 0 to 100). Different administration-methods showed good reliability (ICC 0.88–0.94) and small standard errors (SEM 5.6–7.2). Conclusion:The AMSQ shows satisfying results for validity and excellent reliability; allowing for proper use in research. Due to a large SDC value, caution is needed when using the AMSQ in individual patient care. Further research should determine whether the SDC is smaller than the minimal important change.Implications for RehabilitationThe Arm Function in Multiple Sclerosis Questionnaire (AMSQ) measures activity limitations due to hand and arm functioning in patients with Multiple Sclerosis (MS).Results of this study confirm adequate validity and reliability of the AMSQ in patient with MS.The equivalence of scores from online, paper or interview administration is supported.A change score of ≥18 points on the scale of the AMSQ (on a scale 0–100) needs to occur to be certain a change beyond measurement error has occurred in an individual patient. [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]

Purpose: In this paper, we critically investigate the implementation of person-centered care with the purpose of advancing philosophical debates regarding the overarching aims and delivery of rehabilitation. While general agreement exists regarding person centered care's core principles, how practitioners reconcile the implementation of these principles with competing practice demands remains an open question. Materials and methods: For the paper, we drew on post-qualitative methods to engage in a process of "diffractive" analysis wherein we analyzed the micro-doings of person-centered care in everyday rehabilitation work. Working from our team members' diverse experiences, traditions, and epistemological commitments, we engaged with data from nine "care events" generated in previous research to interrogate the multiple forces that co-produce care practices. Results: We map our analyses under three categories: scripts mediate practice, securing compliance through "benevolent manipulations", and care(ful) tinkering. In the latter, we explore the notion of tinkering as a useful concept for approaching person centered care. Uncertainty, humility, and doubt in one's expertise are inherent to tinkering, which involves a continual questioning of what to do, what is best, and what is person centered care within each moment of care. The paper concludes with a discussion of the implications for rehabilitation and person-centered care. Determinations of what constitutes good, better, or best rehabilitation practices are inevitably questions of ethics. Person-centered care is promoted as good practice in rehabilitation because it provides a framework for attending to the personhood of all engaged in clinical encounters. Post-critical analyses suggest that multiple interacting forces, conditions, assumptions, and actions intersect in shaping each rehabilitation encounter such that what constitutes good care or person-centered care cannot be determined in advance. "Tinkering" is a potentially useful approach that involves a continual questioning of what to do, what is best, and what is person-centered care within each moment of care. [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]

Many people who experience spinal cord injury become long-term wheelchair users. This article addresses the process of becoming en-wheeled through the case example of a disabled man called Patrick. An intrinsic case study informed by posthumanist developments was used. Within this design, Patrick and his manual wheelchair were the entangled participants of the inquiry. Interviews and fieldwork observation with Patrick were conducted. Qualitative data were analysed using the posthumanist notion of 'assemblages'. The results illuminate Patrick's struggle of negotiating a new embodied selfhood that includes the wheelchair. Patrick engaged in ableist rehabilitation after spinal cord injury to recuperate the capacity to walk and break his connection with the wheelchair. After extensive treatment of his body, he reluctantly assumed his cyborg or posthuman condition. The analysis and discussion resulted in a theoretical frame that presents the notions of humanist and posthumanist enwheelment as two directions of a continuum. The paper offers a useful tool for understanding and addressing enwheelment plus other cyborgification processes. We advocate for its acceptance into the disability studies and rehabilitation practice repertoire. Enwheelment –the process of becoming one with the wheelchair – is relevant to people after SCI (or other impairments). The notions of humanist and posthumanist enwheelment are developed and presented as two ends of a continuum. Rehabilitation workers should be mindful of the complexities of cyborgification to avoid ableism and help people flourishing within and beyond recovery. [ABSTRACT FROM AUTHOR]

The aim of this qualitative study was to explore how individuals living with multiple sclerosis experience their disorder in the South African working environment. In this paper we present the experiences of office-based workers living with multiple sclerosis, their challenges, and coping mechanisms. We purposively recruited seven participants who have been diagnosed with multiple sclerosis in the last five years. Participants were interviewed telephonically. Interviews were guided by a semi-structured interview schedule which was supplemented with additional probes. Interviews were analysed thematically using a qualitative software programme. We identified two superordinate themes: bringing multiple sclerosis into the workplace and adapting to multiple sclerosis in the workplace. The findings demonstrated the diverse manner in which participants chose to disclose their multiple sclerosis and manage co-workers' perceptions of multiple sclerosis. Participants employed practical strategies, such as making using of mobility aids, taking notes, conserving energy, and adapting responsibilities. Participants also negotiated accommodations, such as changing working hours, to overcome their unique challenges. Participants emphasised the importance of keeping a general positive attitude but showed reluctance to prepare for their future decline. Our findings indicate that participants manage the disclosure of their diagnosis of multiple sclerosis in order to maintain a favourable relationship with the workplace. Further, despite various physical and psychological limitations, participants were mostly able to adapt to their work environment. Although further research is required, employers and clinicians should consider focusing on the current needs of individuals living with multiple sclerosis to mitigate work-related challenges, rather than planning for future decline. For individuals living with multiple sclerosis and in employment in South Africa, disclosure, management of perceptions and providing accommodations are key aspects in the experience of multiple sclerosis in the workplace. Finding ways to help those in employment disclose their MS diagnosis to employers and co-workers, is an important avenue and next step for intervention research in this field. Early adjustment and adaptation to MS in the workplace is challenging and further negotiation with line-managers regarding accommodations is often required. Employers and clinicians should focus on accommodating the needs of those diagnosed with multiple sclerosis as they arise, rather than focusing solely on the accommodations needed in the future. [ABSTRACT FROM AUTHOR]

Background: The Independent Living Movement seeks to promote independence for people living with disabilities by encouraging them to direct their own care. Programs exist that strive to teach individuals the necessary skills to live independently; however, these programs have not been widely researched. Purpose: The purpose of this paper is to explore alumni perceptions of a long-duration, immersive, independent living program and its influence on community independent living. Methods: Nine individuals who had previously attended the Gage Transition to Independent Living program in urban Toronto were interviewed to ascertain their perceptions on the program and how it assisted with independent community living, as well as their feedback for program improvement. Results: Most participants reported a positive impact from the program, and five main themes were developed: (i) referral source and expectations, (ii) perspectives of program and staff, (iii) navigating housing, (iv) benefits to transition and (v) recommendations for program improvement. Conclusions: Independent living skills education programs seem to have a positive impact on the participants who complete them. Further research should target direct comparisons of program models and effect on quality of life as measured by validated constructs. Incorporating a life skills component for individuals with physical disabilities can improve their transition to independent living. Skills such as self-advocacy, directing attendant services, and completing instrumental activities of daily living are found to be the most efficacious components taught within an independent living skills program. Greater awareness of independent living skills educational programs are needed amongst healthcare professionals to inform individuals who could benefit from such interventions. [ABSTRACT FROM AUTHOR]

Purpose: The main objectives of this study were to learn from youths with intellectual and developmental disabilities about the ways their families were involved in their engagement in community life and to capture how they felt about such involvement. Method: The current study is a secondary analysis of a larger study, the Voices of Youths Research Project, framed by inclusive research methods. Thirty-eight semi-structured interviews that discussed perspectives on friendship, social inclusion, and quality of life from 20 participants (ages 13 to 24 years) were included in this paper. All interviews were video-recorded and coded using NVivo 10. Thematic analysis of the coded segments was guided by a constructivist grounded theory approach. Results: Three major themes emerged from the experiences of youths with intellectual and developmental disabilities on family involvement in their social and community engagement: (1) complex of supports and influences, (2) community engagement with and through family, and (3) points of tension. Conclusions: These thematic findings offer insights into the lived experiences of youths with intellectual and developmental disabilities about engagement in community life. These findings provide an understanding, outside of conventional schemas, of transition into young adulthood for these youths. Rehabilitation professionals often work with youths with intellectual and developmental disabilities who face barriers to reaching transition goals identified either by themselves or others. Family members' views that may focus on goals of maximizing functional independence and/or decreasing caregiver demands can often overshadow the goals or views of youths with intellectual and developmental disabilities themselves. Rehabilitation professionals should find ways to explore with youth their family's roles in engagement and belonging in community life so that they can link youths to appropriate community resources and plan optimal interventions/programs. Rehabilitation professionals need to be aware of and respond to points of tension that can emerge between youths with intellectual and developmental disabilities and their family during transition. [ABSTRACT FROM AUTHOR]

Purpose:This paper explains and demonstrates the pilot application of Triangulated Proxy Reporting (TPR); a practical technique for enhancing communication around people who have severe cognitive impairment (SCI). Methods and results:An introduction explains SCI and how this impacts on communication; and consequently on quality of care and quality of life. This is followed by an explanation of TPR and its origins in triangulation research techniques. An illustrative vignette explicates its utility and value in a group home for a resident with profound multiple disabilities. The Discussion and Conclusion sections propose the wider application of TPR for different cohorts of people with SCIs, their communication partners and service providers. Conclusions:TPR presents as a practical technique for enhancing communication interactions with people who have SCI. The paper demonstrates the potential of the technique for improving engagement amongst those with profound multiple disabilities, severe acquired brain injury and advanced dementia and their partners in and across different care settings.Implications for RehabilitationTriangulated Proxy Reporting (TPR) shows potential to improve communications between people with severe cognitive impairments and their communication partners.TPR can lead to improved quality of care and quality of life for people with profound multiple disabilities, very advanced dementia and severe acquired brain injury, who otherwise are very difficult to support.TPR is a relatively simple and inexpensive technique that service providers can incorporate into practice to improving communications between clients with severe cognitive impairments, their carers and other support professionals. [ABSTRACT FROM PUBLISHER]

Purpose: Rehabilitation goals often focus on increasing community integration for adults with disabilities and are measured by objective assessments. Research methods have lagged behind in capturing current conceptualizations of community integration as a multidimensional construct that incorporates participation, social supports, and feelings of belonging in the community. This paper addresses this challenge by describing a multi-method approach to assessing community integration for adults with cerebral palsy. Methods: Measures include standardized questionnaires, qualitative methods, measures of function and physical activity, and geospatial measures using Geographic Information System mapping and Global Positioning System tracking. These objective and subjective data are used to determine where adults spend time and are most active, and which activities and social connections are associated with feeling integrated into the community. Results: Two case examples highlight the importance of using a multi-method approach to assess community integration for adults with cerebral palsy. Results of objective clinical measures were comparable among case examples; however, actual experiences of feeling connected to the community were vastly different. Conclusions: Multiple measures are required to capture the complexity of community integration. Relying solely on objective measures may not provide a complete picture of community integration. Community integration is a complex construct that incorporates participation, socialization, and feelings of belonging in the community. New methods and measures are needed to assess the many aspects of community integration in adults with disabilities. A multi-method approach is recommended to provide a richer characterization of community integration in individuals with disabilities. A combination of quantitative and qualitative measures addressing the physical, social and psychological aspects of community integration should be used. [ABSTRACT FROM AUTHOR]

Purpose: This paper presents the phenomenon of stigmatisation among injured immigrant and ethnocultural minority workers experiencing a long-standing disability. Stigmatisation was one of the main findings of our study, the aim of which was to gain insight into the work rehabilitation process in the context of intercultural relations in Quebec. Various categories of stakeholders took part in the study, which sought to describe their experiences and perspectives and to identify the constraints, barriers, facilitators, and specific needs they encounter in terms of intercultural competencies. Methods: A purposive sample of 40 individuals was selected and divided into four groups: workers (N = 9), clinicians (N = 15), workers' compensation board rehabilitation experts (N = 14), and workplace representatives (N = 2). Semi-structured interviews were conducted using the critical incident technique, combined with an "explicitation" interviewing technique. Data collection and analysis procedures were based on grounded theory. Results: This study shows that immigrant and ethnocultural minority workers may experience stigmatisation as a cumulative process involving different concomitant parts of their "identity": age, gender, social class, ethnicity, mental health, and occupational injuries. Cumulative stigma may aggravate personal distress and feelings of shame, rejection, and disqualification from full social acceptance. Negative anticipatory judgements made by practitioners may undermine the therapeutic relationship and breach mutual trust and confidence. Conclusions: The phenomenon of stigmatisation is well documented in the sociological and health literature, but studies tend to focus on only one type of stigma at a time. Future research should focus on the cumulative process of stigmatisation specifically affecting immigrant and ethnocultural minority workers and its potentially damaging impact on self-concept, healthcare delivery, rehabilitation interventions, and the return to work. The repetition of certain clinical situations with people from certain groups should not lead practitioners to undue generalizations, even if they may sometimes be accurate; these generalizations must always be verified on a case by case basis. Ethnicity and culture, along with other social attributions, should serve as working hypotheses or support tools in health communication, not as hindrances to clinical reasoning. Practitioners should deepen their understanding of the patient's treatment expectations and the support available for rehabilitation in his family and community. Stigma in the context of care is linked to the idea of conforming to the proposed institutional models of care (including expected beliefs, attitudes, and behaviours). Therefore, practitioners should be aware that alleged differences, misunderstanding or disagreements can highlight an asymmetry in practitioner–patient power relationships. Organisations should also promote exchange and reflection on how to adapt their institutional models to avoid asymmetrical power relations. Intercultural training should be promoted at the various organisational levels so that managers, decision-makers, and practitioners share a common knowledge of the challenges of intervention in multi-ethnic settings. [ABSTRACT FROM AUTHOR]

Purpose: To explore participants' personal perspectives: on psychosocial aspects of living with multiple sclerosis (MS) following inpatient rehabilitation; and on experiences of the rehabilitation hospital stay and discharge to home. Methods: One-on-one, semi-structured in-depth interviews, were conducted with 15 people with various forms of MS, post discharge from a rehabilitation hospital. Thematic analysis of the data was undertaken. Results: The emergent themes were: Fatigue, Independence and Dependence, Loss, Provision of Care, and Perceptions of Care. The first three themes shared a focus on the lived experience of MS and are the subject of this paper. Each of the two remaining themes were essentially independent of the other themes, with one being centred on experiences of the rehabilitation hospital stay, and the other on aspects of general medical care. Conclusions: Personal perspectives on living with MS following inpatient rehabilitation focussed on: the negative impacts of physical and mental fatigue; the desire to maximise independence in activities of daily living and to minimise reliance on others; and perceptions of loss. These findings shed new light on psychosocial aspects of the lived experience of MS and, as such, have potential applications in rehabilitation for those with MS. Physical and mental fatigue is central to the lived experience of multiple sclerosis, as it has an all pervading negative influence on most aspects of life, and can be considerably debilitating. The severe and debilitating effects of multiple sclerosis-related fatigue mandate an explicit focus, of rehabilitation, on fatigue, and, in particular, on the fostering of the development of strategies that serve to minimise the multitude of negative impacts of fatigue. For those with multiple sclerosis, considerable importance is placed on maintaining or regaining independence in activities of daily living, and in daily personal care activities, in particular, partly because a need to rely on an intimate partner or other family member for support with such activities can be problematic. The high importance of independence in activities of daily living, and in daily personal care activities in particular, is indicative of the need for multiple sclerosis rehabilitation to have an explicit focus on this domain, in terms of interventions that aim to maximise independence in such activities. [ABSTRACT FROM AUTHOR]

Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities. Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors. Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities. Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response. Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability. Persons with disabilities are vulnerable to HIV infection but have historically been excluded from HIV and AIDS services, including prevention education, testing, treatment, care and support. Fundamental change is needed to address practical and attitudinal barriers to access, including provider training. Rehabilitation professionals and HIV service providers alike must acknowledge the two-way relationship between HIV and disability: people with disability are vulnerable to HIV infection; people with HIV are increasingly becoming disabled. Peer participation by persons with disabilities in the design and implementation of HIV services is crucial to increasing accessibility. Addressing political will (through the National Strategic Plan for HIV) is crucial to ensuring long-term sustainable change in recognizing and responding to the heightened vulnerability of people with disability to HIV. [ABSTRACT FROM AUTHOR]

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

Purpose: This paper addresses how Medicaid personal care attendant (PCA) service users with physical disabilities experience barriers to cross-state movement arising from the interstate variation in these programs. Using the Moves in Context model, this analysis focuses on the structural-level influences on individual cross-state move trajectories. Methods: Semi-structured interviews were conducted with 18 Medicaid PCA service users who were considering or pursuing cross-state moves motivated by opportunity. Questions addressed the cross-state move process; social participation; education and employment; and access to PCA services. Grounded theory methods were used to analyze interview transcripts and generate analytic codes and categories. Findings: Participants described their experiences with interstate variation in Medicaid PCA services in terms of (1) contending with conflicts between the need for services and the desire for cross-state moves; (2) navigating "hoops of fire"; and (3) recasting imagined futures. Participants also expressed experiences of intrastate confinement, or being stuck in their current state (4) using metaphors of immobility and (5) recognizing intrastate confinement as a form of categorical exclusion. Conclusion: Interstate variation in Medicaid PCA policy impedes program users' ability to pursue educational and occupational advancement, and leads to feelings of second-class citizenship. Policy changes should be explored to affirm the autonomy of Medicaid PCA service users. Interstate variation in Medicaid PCA services and cross-state moves • Medicaid personal care assistance service users desire and pursue cross-state moves, especially when drawn by educational or employment opportunities. • Interstate variation in Medicaid policy negatively impacts the ability for PCA service program users to pursue these moves due to gaps or delays in service access, creating inequity in opportunity and feelings of second-class citizenship. • Individual users of Medicaid PCA services need information and services as they plan pursue cross-state moves. • States and the Center of Medicare and Medicaid Services should offer guidance to support the independent living, educational, and economic goals of users of PCA services who desire cross-state moves. [ABSTRACT FROM AUTHOR]

Purpose: Though high numbers of children with cerebral palsy experience chronic pain, it remains under-recognized. This paper describes an evaluation of implementation supports and adoption of the Chronic Pain Assessment Toolbox for Children with Disabilities (the Toolbox) to enhance pain screening and assessment practices within a pediatric rehabilitation and complex continuing care hospital. Methods: A multicomponent knowledge translation strategy facilitated Toolbox adoption, inclusive of a clinical practice guideline, cerebral palsy practice points and assessment tools. Across the hospital, seven ambulatory care clinics with cerebral palsy caseloads participated in a staggered roll-out (Group 1: exclusive CP caseloads, March–December; Group 2: mixed diagnostic caseloads, August–December). Evaluation measures included client electronic medical record audit, document review and healthcare provider survey and interviews. Results: A significant change in documentation of pain screening and assessment practice from pre-Toolbox (<2%) to post-Toolbox adoption (53%) was found. Uptake in Group 2 clinics lagged behind Group 1. Opportunities to use the Toolbox consistently (based on diagnostic caseload) and frequently (based on client appointments) were noted among contextual factors identified. Overall, the Toolbox was positively received and clinically useful. Conclusion: Findings affirm that the Toolbox, in conjunction with the application of integrated knowledge translation principles and an established knowledge translation framework, has potential to be a useful resource to enrich and standardize chronic pain screening and assessment practices among children with cerebral palsy. It is important to engage healthcare providers in the conceptualization, development, implementation and evaluation of a knowledge-to-action best practice product. The Chronic Pain Toolbox for Children with Disabilities provides rehabilitation staff with guidance on pain screening and assessment best practice and offers a range of validated tools that can be incorporated in ambulatory clinic settings to meet varied client needs. Considering unique clinical contexts (i.e., opportunities for use, provider engagement, staffing absences/turnover) is required to optimize and sustain chronic pain screening and assessment practices in rehabilitation outpatient settings. [ABSTRACT FROM AUTHOR]

Purpose: Scholars agree that effective rehabilitation relies on a bedrock of reciprocity, relational trust, and authenticity. It is therefore essential for practitioners to develop insight into the complex dynamics within helping relationships. This study aims to provide an in-depth understanding of visually impaired students' experience of informal helping relationships. Methods: Ten visually impaired students at a South African university participated in one of two semi-structured focus group interviews (six and four in each group, respectively) wherein we explored their experience of informal helping relationships. Interpretive phenomenological analysis was used to make sense of the data. Results: Help, according to the participants, can militate against visibility and complete acceptance, and has the potential to cause helpers to feel entrapped. By contrast, some students found that help offered benefits to relationships by boosting the helper's self-esteem and affording disabled students the opportunity to make friends. Conclusion: Decisions whether to accept help were mediated more by relationship factors than by the need for help. These findings are important for rehabilitation professionals, as deep relationship can come into being during the course of a rehabilitation process. Although this study was conducted in an informal setting, the relational dynamics that we explore are also applicable to clinical relationships between disabled persons and rehabilitation professionals. In this paper, we provide an overview of the intricacies involved in care and helping relationships; In order for rehabilitation to be successful, these relationships should ideally be real, trusting, and authentic; Yet, authenticity and spontaneity often get lost in helping relationships, as help-recipients may deny help when they need it, and accept help when perfectly able to cope without it. These decisions are mediated more by relationship factors than by the need for help; In their daily practice, it is essential for health professionals to be mindful of these relational intricacies within care relationships; We recommend that professionals remain motivated to continuously reflect on their own actions and on the emotional investment they might have in their role as a helper; Our last recommendation is for rehabilitation professionals to spend energy on exploring, through open and transparent discussions with their disabled patients, the relational dynamics in their relationship. [ABSTRACT FROM AUTHOR]

Medical science and other sources, such as the media, increasingly inform the general public's understanding of disease. There is often discordance between this understanding and the diagnostic interpretations of health care practitioners (HCPs). In this paper – based on a supra-analysis of qualitative interview data from two studies of joint pain, including osteoarthritis – we investigate how people imagine and make sense of the pathophysiology of their illness, and how these understandings may affect self-management behavior. We then explore how HCPs' use of medical images and models can inform patients' understanding. In conceptualizing their illness to make sense of their experience of the disease, individuals often used visualizations of their inner body; these images may arise from their own lay understanding, or may be based on images provided by HCPs. When HCPs used anatomical models or medical images judiciously, patients' orientation to their illness changed. Including patients in a more collaborative diagnostic event that uses medical images and visual models to support explanations about their condition may help them to achieve a more meaningful understanding of their illness and to manage their condition more effectively. Chronic musculoskeletal pain is a leading cause of pain and years lived with disability, and despite its being common, patients and healthcare professionals often have a different understanding of the underlying disease. An individual's understanding of his or her pathophysiology plays an important role in making sense of painful joint conditions and in decision-making about self-management and care. Including patients in a more collaborative diagnostic event using medical images and anatomical models to support explanations about their symptoms may help them to better understand their condition and manage it more effectively. Using visually informed explanations and anatomical models may also help to reassure patients about the safety and effectiveness of core treatments such as physical exercise and thereby help restore or improve patients' activity levels and return to social participation. [ABSTRACT FROM AUTHOR]

Purpose: This paper explores the barriers which people with disabilities experience in accessing health care services in Malawi. Methodology: Fifty-two in-depth interviews were conducted with people with various types of disabilities. These interviews were conducted in four districts in Malawi: Blantyre and Phalombe in the Southern Region; Ntchisi in the Central Region, and Rumphi in the North. A team of trained research assistants conducted the interviews. Results: The major challenges that people with disabilities experience include the cost of accessing health care, long distances to health facilities, lack of transport, hilly terrains and flooding of rivers during the rainy season, communication challenges with the health providers and poor attitude of health workers. Some of these challenges are not unique to people with disabilities, but constitute more of a problem among people with disabilities. Conclusion: There is a need to address these challenges through the expansion of the provision of assistive devices, implementing comprehensive outreach services targeting people with disabilities and strengthening the links between key component of access to quality health care. Attitudinal barriers and lack of resources remain major challenges. Implications for rehabilitation: Though people with disabilities face challenges accessing health care world-wide, the challenges are greater in low-income countries. The current study in Malawi confirms this. Major challenges include costs of care, transport costs, and inaccessible facilities. Lack of health worker awareness and attitudinal barriers are major issues of concern. It is imperative, given this situation, that effort is spent in Malawi and similar contexts on dealing with issues of stigma and discrimination especially in the health care sector. It is also important to explore cost-effective ways of assisting people with disabilities accessing appropriate transport, which should be seen as part of the healthcare system. Though the cost of providing equitable care may be high in low-income contexts, this is a human right. Training and creating an accessible and disability-friendly service environment is a key priority. [ABSTRACT FROM AUTHOR]

Background: At a political and academic level, South Africa propagates a rights-based approach to disability. The aim of this paper is to explore how disability is conceptualized by persons with disabilities living in a rural area of South Africa. Methods: In keeping with explorative studies, the study utilized a qualitative design in the form of eight case studies. Case study participants were sampled purposively and data were collected through semi-structured interviews. Data were analyzed according to the principles of interpretative phenomenological analysis. Results: Five themes evolved from the findings. These were no identification with disability, individual approach to disability, the role of personal factors, the role of Christianity as well as attitudes, and support of significant others. Conclusion: Findings showed that there is a need to bridge the divide between rhetoric and reality for these participants whose stories might resonate with those of many other South Africans. Implications for rehabilitation: South Africa is seen as a country that has an inclusive approach to disability and approach disability from a human rights angle. The article shows that some South Africans are excluded from the dialog on disability, human rights, access, and health care. Their health and community integration outcomes are left to crippling beliefs about disability, chance and personal attributes. The academic and political rhetoric does not describe the situation of study participants, and by assuming all South Africans are included, it further marginalizes them. [ABSTRACT FROM AUTHOR]

Purpose: This paper reports on one of the themes that emerged from the analysis of the study, regarding the perceived influence of multiple sclerosis (MS) on the identity of mothers in the socio-cultural context of Italy.Method: In-depth interviews were conducted with 16 women at various stages of MS, with follow up interviews with seven of the women. Phenomenology guided the methodology and the analysis was conducted using interpretative phenomenological analysis.Results: Through the research the value of motherhood to the women who participated emerged. The findings illustrated how many strove to maintain control of their MS, which led to some making comparisons of themselves and other mothers and feeling different. Some women described how they adjusted their roles and found strength in being mothers but others spoke of their feelings of loss. Most women described living in the moment, appreciating the present and living each day as it came. Another significant experience was fear of stigma, both realized in the form of “pity” from others, and the perceived and actual associated stigma for their families. This contributed to why some women were reluctant to disclose their condition. The mothers who took part in this study differed in how they perceived their disabled identity.Conclusion: Although this study was conducted in the socio-cultural setting of Italy, the findings have implications for professionals working with disabled mothers and women with MS in Italy and beyond; including recognizing the value associated with fully identifying oneself as a mother, rather than solely focusing on doing mothering tasks. Implications for Rehabilitation Professionals need to be mindful of the value of motherhood for women with multiple sclerosis.Professionals should support women who feel like they are battling with maintaining control of their multiple sclerosis, who may be adjusting their identity as mothers; recognizing that they may be influenced by the stage of their multiple sclerosis and whether they were diagnosed before or after having their children.Women can have feelings of loss related to their ability to fully participate in their children’s lives and professionals should work with women to help them identify the value of their mothering role not only in physically participating in activities but also in being emotionally and physically present as a mother. [ABSTRACT FROM AUTHOR]

Purpose:Older people living in the community need to plan for getting help quickly if they have a fall. In this paper planning for falls is referred to as contingency planning and is not a falls prevention strategy but rather a falls management strategy. This research explored the perspectives of older people and community workers (CWs) about contingency planning for a fall. Method:Using a qualitative descriptive approach, participants were recruited through a community agency that supports older people. In-depth interviews were conducted with seven older people (67–89 years of age) and a focus group was held with seven workers of mixed disciplines from the same agency. Older people who hadn’t fallen were included but were assumed to be at risk of falls because they were in receipt of services. Thematic analysis and concept mapping combined the data from the two participant groups. Results:Four themes including preconceptions about planning ahead for falling, a fall changes perception, giving, and receiving advice about contingency plans and what to do about falling. Conclusion:Both CWs and older people agree contingency planning requires understanding of individual identity and circumstances. CWs have limited knowledge about contingency planning and may be directive, informative, or conservative.Implications for RehabilitationFalls can result in serious consequences for older people.There is an evidence-practice gap as availability of and access to contingency planning does not necessarily mean older people will use it in a falls emergency.Older people prefer community workers to be directive or informative about contingency planning options but they do want choice and control.Increased community workers knowledge of, and collaborative decision-making about, contingency planning may promote patient-centered services and assist in closing the evidence-practice gap. [ABSTRACT FROM PUBLISHER]

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

Purpose: Intestinal stoma formation profoundly changes the relationship between a person and their social world. The aim of this study was to understand the experience of living with a new stoma; this paper explores the theme "disrupted social world," highlighting how stoma-forming surgery impacts on individuals' abilities to participate and interact socially over time. Method: A longitudinal phenomenological approach. Twelve participants with a new stoma were recruited using purposeful sampling. Data were collected at three, nine and 15 months following surgery through in-depth, unstructured interviews and analysed using a bespoke iterative framework. Results: Three categories were identified: participation in the social environment; interpersonal relationships: changes and challenges; and setting and achieving goals. Conclusions: Stoma-forming surgery changes the ways people relate to their social environment and connect with others, creating self-consciousness and impeding social confidence and autonomy. Understanding the social implications of stoma-forming surgery can help clinicians to provide responsive and appropriate support to facilitate social rehabilitation. [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]

Purpose:The patients diagnosed with Ehlers–Danlos Syndrome Hypermobility Type (EDS-HT) are characterized by pain, proprioceptive inacuity, muscle weakness, potentially leading to activity limitations. In EDS-HT, a direct relationship between muscle strength, proprioception and activity limitations has never been studied. The objective of the study was to establish the association between muscle strength and activity limitations and the impact of proprioception on this association in EDS-HT patients. Methods:Twenty-four EDS-HT patients were compared with 24 controls. Activity limitations were quantified by Health Assessment Questionnaire (HAQ), Six-Minute Walk test (6MWT) and 30-s chair-rise test (30CRT). Muscle strength was quantified by handheld dynamometry. Proprioception was quantified by movement detection paradigm. In analyses, the association between muscle strength and activity limitations was controlled for proprioception and confounders. Results:Muscle strength was associated with 30CRT (r = 0.67,p = <0.001), 6MWT (r = 0.58,p = <0.001) and HAQ (r = 0.63,p= <0.001). Proprioception was associated with 30CRT (r = 0.55,p < 0.001), 6MWT (r = 0.40,p = <0.05) and HAQ (r = 0.46,p < 0.05). Muscle strength was found to be associated with activity limitations, however, proprioceptive inacuity confounded this association. Conclusions:Muscle strength is associated with activity limitations in EDS-HT patients. Joint proprioception is of influence on this association and should be considered in the development of new treatment strategies for patients with EDS-HT.Implications for rehabilitationReducing activity limitations by enhancing muscle strength is frequently applied in the treatment of EDS-HT patients. Although evidence regarding treatment efficacy is scarce, the current paper confirms the rationality that muscle strength is an important factor in the occurrence of activity limitations in EDS-HT patients.Although muscle strength is the most dominant factor that is associated with activity limitations, this association is confounded by proprioception. In contrast to common belief proprioception was not directly associated with activity limitations but confounded this association. Controlling muscle strength on the bases of proprioceptive input may be more important for reducing activity limitations than just enhancing sheer muscle strength. [ABSTRACT FROM AUTHOR]

Purpose:In Canada, two counseling services are offered to facilitate physical activity participation among persons with physical disabilities, yet both have encountered concerns related to the recruitment and retainment of clients. The purpose of this paper is to explore factors related to service adoption among nonusers, and the barriers and facilitators to maintaining service participation among adopters. Methods:Individuals who had never enrolled in the services (nonusers,n = 13) as well as current/previous service clients (adopters,n = 26) participated in interviews based on the Theoretical Domains Framework. Transcripts were subjected to deductive thematic analysis according to participant group. Results:Fifteen themes relating to service adoption within 10 of the 12 theoretical domains were identified for nonusers, while 23 themes relating to maintenence of service participation were identified across all 12 theoretical domains for adopters. Conclusions:The findings provide strategies to improve recruitment, adoption, and retention of clients in counseling services and to enhance the experiences of targeted service users. Implications for RehabiliationPeer support and education for equipment use should be built into physical activity programs to encourage participation among persons with physical disabilities.Programs that encourage physical activity among individuals with disabilities should be designed by practitioners to be responsive to a variety of needs, which are addressed in the program’s advertisements and offerings.The Theoretical Domains Framework is a useful framework for providing valuable insight about clients’ experiences of adoption and maintenance of a behavior change service, suggesting merit in other rehabilitation settings. [ABSTRACT FROM PUBLISHER]

Purpose:In this paper we examine how the intersection of various social and political influences shapes discharge planning and rehabilitation practices in ways that may not meet the espoused aims of rehabilitation programs or the preferences of older adults and their families. Methods:Taking a critical bioethics perspective, we used microethnographic case study methods to examine discharge-planning processes in a well-established older adult inpatient rehabilitation setting in Canada. The data included observations of discharge-planning family conferences and semi-structured interviews conducted with older adults facing discharge, their family members and rehabilitation professionals involved in discharge planning. Results:From the time of admission, a contextual push to focus on discharge superseded program aims of providing interventions to increase older adults’ functional capabilities. Professionals’ primary commitment to safety limited consideration of discharge options and resulted in costly and potentially unnecessary recommendations for 24-hour care. The resulting “rehabilitation” stay was more akin to an extended process of “destination triage” biased towards the promotion of physical safety than optimizing functioning. Conclusions:The resulting reduction of rehabilitation into “destination triage” has significant social, financial and occupational implications for older adults and their families, and broader implications for healthcare services and overarching healthcare systems. Implications for RehabilitationCurrent trends promoting consideration of discharge planning from the point of admission and prioritizing physical safety are shifting the focus of rehabilitation away from interventions to maximize recovery of function, which are the stated aims of rehabilitation.Such practices furthermore promote assessments to determine prognosis early in the rehabilitation stay when accurate prognosis is difficult, which can lead to overly conservative recommendations for discharge from rehabilitation services, thus further negating the impact of rehabilitation.Further work is required to examine the social, occupational and functional implications of superseding rehabilitation interventions to maximize capabilities with practices that prioritize safety over quality of life for older adults and their family members. [ABSTRACT FROM PUBLISHER]

Purpose:This paper seeks to document the progression of disability in a developing country and to examine gender differences in this process. Methods:The data come from the Mexican Health and Aging Study (MHAS), a nationally representative sample of older adults. An ordinal logistic regression (n = 3283) is used to measure the progression of disability that considers: (1) no disability, (2) mobility problems, (3) mobility problems with IADLs limitations, (4) mobility problems with ADLs limitations, (5) combinations of the latter three and (6) death. Results:Approximately 43% of the sample remained in the same level of disability after 2 years. The patterns of progression with two disabilities differ for men and women. Conclusions:Our model reflects the importance of separating ADLs and IADLs in the study of disability progression in Mexico. Varying risk profiles and cultural differences might influence the divergent disability paths followed by each gender.Implications for RehabilitationThe disablement process involving transitions from mobility impairments to IADL and ADL limitations seen in developed countries differs for older adults in Mexico.Cultural differences may influence the progression from non-disabled to becoming disabled in different ways for females in developing countries like Mexico.One-fifth of individuals showed greater function and independence over time, suggesting that the disablement process is reversible. This finding highlights the need to focus on improving mobility, ADL, and IADL skills to facilitate successful aging.Although disability is often conceptualised as a combination of ADL and IADL limitations, gender differences seen in Mexico indicate the need to separate ADL and IADL when developing approaches to prevent or ameliorate disability. [ABSTRACT FROM AUTHOR]

Purpose:Very little is known about how older people from black and minority ethnic (BME) groups caring for someone after a stroke access and engage with social care services. This paper explores both the experiences of carers whose relative was receiving social care services in their own home and the value of a theory of humanising care to understand and explain these experiences. Method:Semi-structured interviews were undertaken with 50 carers from five different ethnic groups: Asian Indian, Asian Pakistani, Black African, Black Caribbean and White British. Data were thematically analysed within a phenomenological framework. Results:Five interacting themes emerged: communication and bureaucracy; time and timing; communication and rapport building; trust and safety; humanity and the human dimensions of care. Many of the experiences could be interpreted within a conceptual framework of humanising care underpinned by eight interacting dimensions of what it means to be treated as an individual and a human. Conclusions:Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity.Implications for RehabilitationExplicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups.Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers’ sense of entitlement and competence in engaging with homecare services.Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services. [ABSTRACT FROM AUTHOR]

Purpose:Scant research has been undertaken to explore in-depth the meaning of bodily change for individuals following stoma formation. The aim of this study was to understand the experience of living with a new stoma, with a focus on bodily change. Method:The study adopted a longitudinal phenomenological approach. Purposeful sampling was used to recruit 12 participants who had undergone faecal stoma-forming surgery. In-depth, unstructured interviews were conducted at 3, 9 and 15 months following surgery. A five-stage framework facilitated iterative data analysis. Results:Stoma formation altered the taken-for-granted relationship individuals had with their bodies in terms of appearance, function and sensation, undermining the unity between body and self. Increasing familiarity with and perceived control over their stoma over time diminished awareness of their changed body, facilitating adaptation and self-acceptance. Conclusions:Stoma formation can undermine an individual’s sense of embodied self. A concept of embodiment is proposed to enable the experience of living with a new stoma to be understood as part of a wider process of re-establishing a unity between body, self and world. In defining a framework of care, individuals with a new stoma can be assisted to adapt to and accept a changed sense of embodied self.Implications for RehabilitationAwareness and understanding of the diverse ways in which stoma formation disrupts the unconscious relationship between body and self can help clinicians to provide responsive, person-centred care.Supporting strategies that facilitate bodily mastery following stoma formation will facilitate rehabilitation and promote adjustment and self-acceptance.A concept of embodiment can help clinicians to deepen their understanding of the experiences of people living with a new stoma and the support they may require during the rehabilitation process.This paper provides clinicians with actionable insight that allows them to better support patients to a smoother adjustment process after stoma formation. [ABSTRACT FROM AUTHOR]