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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]

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]

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]

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]

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]

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]