Collaborations between young people living with bodily impairments and their multiprofessional teams: The relational dynamics of participation and power

This paper explores how more or less relationally oriented forms of professional practices could be expressed in collaborations between young people living with bodily impairments and their multiprofessional teams. The analysis was based on life-mode interviews with young people (16–20 years), individual and focus group interviews with the professionals and participant observation in team meetings. Drawing on sociocultural perspectives on participation and the workings of power, different discourses, subject positions and participatory strategies were recognised and related to the participation of the young people. Finally, the relevance of the findings for practice is reflected on in a participation rights perspective.     

Assessment of physical activity in older people with and without cognitive impairment

The purpose of this study was to validate a new interview-administered physical activity questionnaire (Assessment of Physical Activity in Frail Older People; APAFOP) in older people with and without cognitive impairment. The authors assessed feasibility, validity, and test-retest reliability in 168 people (n = 78 with, n = 88 without cognitive impairment). Concurrent validity was assessed against an inertia-based motion sensor and an established questionnaire. Sensitivity to change was tested in an ongoing study in patients with mild to moderate dementia (n = 81). Assessment of physical activity by the APAFOP and the motion sensor correlated well in the total sample (TS; p = .705), as well as in the subsamples with cognitive impairment (CI; p = .585) and without CI (p = .787). Excellent feasibility with an acceptance rate of 100%, test-retest reliability (intraclass correlation coefficients ranging from .973 (TS) to .975 (CI) to .966 (no CI), and sensitivity to change (effect sizes: 0.35-1.47) were found in both subsamples.     

Identity,impairment and disablement: exploring the social processes impacting identity change in adults living with acquired neurological impairments

The social model of disability acknowledges the impact of impairments but argues that disablement is socially constructed. Taking a theoretical perspective, underpinned by the social model of disability and elements of social identity theory, we investigated the relationship between impairment, disablement and identity change in adults living with an acquired neurological impairment. Through the thematic analysis, three themes emerged: changing self described the personal factors for identity change in people acquiring impairment; changing communities explored the contextual factors creating both socially constructed disablement and identity change; and influencing identity change considered strategies adopted by individuals to both counter socially constructed disablement and promote exploration of identity. A systemic change towards acknowledgement and valuing a disabled identity may counter socially constructed disablement and support enablement and social inclusivity.     

Struggling to do the right thing: stories from people living with Alzheimer's disease

The information presented in this article is meant not to provide answers, but rather to provoke thought about questions related to ethical decision making in people with Alzheimer's disease. Post (1995) suggested that: among the several most urgent questions of our time is whether human beings have in place the moral and ethical signposts that can point toward a future in which those who are so forgetful will be treated with dignity. (p. 1) Because American society places a high value on rationality and productivity, the life of people with Alzheimer's disease may be equated with hopelessness and uselessness. Thus, health care professionals have a moral obligation to rethink the assumptions that underlie their definitions of quality of life. We cannot know what should be done unless we learn to listen to the life stories of our patients and their families. Perhaps Sherry's comment best reflects how, even with devastating changes in a loved one's sense of identity, one can find ways to respect a new level of relationship: I still feel that he's [Sherry's husband] a human being, and I've tried to ensure that he has a quality of life. When I go visit him, sometimes he slips in and out of being normal. I would always hope that he's still treated with the dignity that he should have as a human being.... I guess what I'm saying is that, even though it seems weird,...there's still a human being in there sometimes, I guess there really is, and it's important to remember that. I can enjoy my husband a lot more now [that he's being cared for in a facility] than I could when I had him 24 hours a day. That was a nerve-wracking experience, especially when there were behavior problems.... He's still the love of my life.     

Independent living programs for young people leaving the care system: The state of the evidence

A substantial body of evidence suggests that young people leaving public care systems are at increased risk for low educational attainment, unemployment, homelessness, physical and mental health difficulties, dependency on public assistance, and involvement with the criminal justice system. Independent living programs (ILPs), which incorporate life skills and personal development, are one strategy frequently used to improve outcomes for young people leaving care. However, the effectiveness of ILPs remains unknown. This paper systematically reviews the current evidence for ILPs, summarizing all controlled comparisons designed to evaluate their effectiveness. Reviewers were unable to find any randomized controlled trial evaluating ILPs, but the results of eight non-randomized controlled studies suggest that some ILPs may have protective effects for youth leaving the public care system. These trends were observed for outcomes related to educational attainment, employment, housing, health, and other life skills; nevertheless, the weak methodological quality of the evidence tempers the validity and generalizability of these conclusions. Further research utilizing random assignment of participants is imperative in order to draw reliable conclusions for policy and practice.     

To live an ordinary life: resource needs and additional costs for people with a physical impairment

Disabled people face increased risks of living in poverty largely due to lower incomes and extra resource requirements compared to non-disabled people. This study incorporated the social model of disability with an economic approach to costing to estimate the additional costs required by people with a physical impairment to achieve an adequate standard of living in New Zealand. Budgets estimating the additional equipment, modifications, transport, support and time required to achieve an adequate standard of living were developed and validated through focus groups with community members. The findings suggest that reducing barriers involves substantial costs ranging from NZ$645–$2,348 per week.     

Independent Living: gender, violence and the threat of violence

In what ways is independent living for young adults with disabilities compromised by violence and its threat? A qualitative study of 42 young adults with severe physical disabilities explored their perceptions and concerns about independent living, access to services and the meeting of needs. Young women especially experienced difficulties about leaving home, because of their own and their parents' fears about vulnerability; some who did leave home experienced highly restricted social lives because of anxiety about neighbourhood violence. Few had established partnerships, but violence and sexual abuse from partners emerged as an issue for which there is little policy. Control and abuse within caring relationships are serious issues for those who need personal care. Violence and lack of protection may undermine independent living, especially for women.     

Impact of physical activity on activity of daily living in moderate to severe dementia: a critical review

The objectives of this study were to describe the different modalities of physical activity programs designed for moderate to severe dementia and to identify their impact on functional independence in activities of daily living (ADL). A critical review of randomized controlled trials related to the impact of physical activity programs in moderately to severely demented persons on ADL performance and meta-analysis of the identified studies were performed. Among the 303 identified articles, five responded to the selection criteria. Four out of the five studies demonstrated limited methodological quality. In one high-quality study, physical activity programs significantly delayed deterioration of ADL performance. The program components and ADL assessment tools vary widely across studies. Although the proposed treatments have not proven their efficiency in improving the ADL status of the patients, they were able to limit the decline in ADL functioning. Future research is warranted in order to identify clinically relevant modalities for physical activity programs for people with moderate to severe dementia.     

Research and empowerment: involving people with learning difficulties in oral and life history research

This paper takes as its central theme the argument that inclusive learning disability research has the potential to be empowering for the people who are involved in it. The author draws from two oral and life history research projects to explore the multiple uses of story-telling and the multi-layered picture of learning disability history that emerged. People with learning difficulties were involved in all stages of the research process, contributing their stories as oral and life historians but also co-researching written records in a bid to know and understand more about their own and other people's past lives. The research enabled participants not only to tell their stories but also to reflect on them, to develop new insights into their meaning and to see them in a wider social and political context.     

Disablism in the lives of people living with a chronic illness in England and Portugal

This article is based on research about the daily lives of people living with chronic illnesses in England and Portugal. Through the first-person narratives of participants, I argue that the lives of people living with debilitating chronic illnesses are affected by disablism, discrimination and exclusion. These aspects affect them in several important realms of life such as lack of or poor social support, difficulties in obtaining reasonable adjustments or the inability to obtain any kind of state support at all. These aspects are also widespread and compound and greatly influence their lives, beyond or in addition to the physical experience of the illness itself. I conclude that it is fundamental to change these structural and policy aspects and that people should have access to what I have termed a paradigm of sustained well-being, despite the illness.     

'Working at Disability': a qualitative study of the meaning of health and disability for women with physical impairments

Seven women with cerebral palsy and one woman with a spinal cord injury were interviewed about the meaning of health and disability in their lives. The most compelling feature of their narratives was the pressure to define their health by able-bodied standards. These women 'worked at' fitting their bodies and experiences into the limited societal understanding of a body. Paradoxically, the women seemed to come to a deeper personal understanding of disability and themselves through this work. The women's stories of health, impairment and disability, as told in the interviews, blended into rich chapters of their life stories.     

In life and in death: the story of people living with metastatic cancer

ABSTRACT

Advances in the treatment of metastatic cancers such as melanoma enable patients to live for many years. However, melanoma patients are under constant threat of a recurrence or a new growth, are under intensive follow-up, and must avoid exposure to the sun. These factors engender anxiety, a constant fear of recurrence, and a reduction in routine activity, thus requiring patients to develop mechanisms for coping simultaneously with the illness and the threat of death. This study uses content analysis of the documentation of a support group for metastatic melanoma patients to examine how they cope with both. The findings suggest that they are able to cope with both simultaneously. However, perhaps because they recognise their total lack of control over the illness, they exercise control in how they cope with death. The findings suggest that support groups like the one documented in this article could serve as sheltered and effective therapeutic spaces for coping with the threat of death.     

The First Hit: a case study of the physical abuse of people with learning disabilities and challenging behaviours in a residential service

This paper describes the circumstances surrounding the physical abuse of persons with learning disabilities and challenging behaviours in a residential service and the general findings of a related inquiry. Evidence is interpreted in relation to wider policy and practice intelligence on the abuse of people with learning disabilities, with lessons for the recognition, reporting and management of abuse identified. The discussion is designed to help those charged with responsibility for the support and protection of people with learning disabilities understand the complex circumstances and conditions which may be associated with an abusive service culture, with the culture of abuse itself examined at four levels. Suggestions for reviewing the development and implementation of adult protection policies and procedures are offered, along with priorities for action and implementation for purchasers and providers.     

A grounded theory of living a life with a physical disability in Taiwan

This study explores the experiences of disability for a number of Taiwanese adults with a physical disability. Using a grounded theory approach, their experiences of living a life with a physical disability were gained through in-depth interviews. The resulting grounded theory ‘it is more than just the impaired body’ presents the dynamic interactions between the participants and the context in which they were living their lives and how they managed their lives within that context. With its inclusion of the cultural dimension, a holistic way of understanding the daily lives of those who experience physical disability in Taiwan is provided.     

A positive outlook? The housing needs and aspirations of working age people with visual impairments

This paper arises from research, funded by the Housing Corporation and the Thomas Pocklington Trust, which investigated the housing needs and priorities of visually impaired people of working age, a population that has received little public policy attention. We report on the housing circumstances and aspirations of 121 people living in London. In-depth study discovered that people of working age who have vision impairment can be disadvantaged by inflexible procedures that adversely affect their transition to independence, as well as their self-determination with respect to family issues. The study also learned that this population has particular needs in relation to domestic and outside space, home location and safety and security measures. Furthermore, the interviewees indicated that specialist supported housing may develop a stronger role if it diversifies and provides non-institutional stepping stones towards greater autonomy.     

The value of employment for people living with spinal cord injury in Norway

The purpose of this article is to examine the value of employment for people living with spinal cord injury in Norway. The main focus in the 31 interviews dealt with general perceptions of integration and participation. The value of employment was a major theme, primarily described by the participants in terms of personal and social identity in interaction with others, as a hegemonic social norm and a sense of moral obligation to contribute to society. The value of meaningful regular jobs – in contrast to government projects jobs or routine jobs – was emphasized.     

The threat of abuse: problems in aggression and individuality.

Children whose early developmental years are marked by constant threat of parental abuse often manifest as adults an inability to tolerate aggression or to develop close relationships.     

The use of Information and Communication Technology (ICT) in the rehabilitation of individuals with severe functional impairments in a municipal care service system

This article explores the development of a scheme to use Information and Communication Technology (ICT) in the training of individuals with severe functional impairments. Computers were used as an integral part of a rehabilitation programme for training, and the authors found that the resource was a useful addition to other treatment methods. This article describes the development and subsequent setting up of computers for training and how the study progressed. The study used a somewhat unique bottom up approach that first trained care-giving staff in computer skills. The caregivers in turn worked with and trained some of those they served. This learning strategy drew upon the concept of learning, empowerment and the motivation of all involved in a system and process. The study found that by using ICT all involved felt a greater sense of empowerment and improvement in the quality of life. That caregivers were involved at all stages was valuable in that they felt an ownership of the process and that they also benefited from being involved because they also learned new skills.     

Health status risk factors of people with severe and persistent mental illness.

High rates of medical comorbidity and premature death have become normative health outcomes for individuals with mental illness. On average, people with mental illness die 10 to 15 years earlier than the general population. To date, little research and programmatic attention has focused on the health promotion and prevention needs of people with mental illness. Many factors have been cited as contributing to this problem, including the stigma of being mentally ill, poverty, and limited knowledge and access to health promotion services. Future health planning interventions should restructure the funding mandates of current health care delivery system from an illness and treatment model to one of illness prevention and health promotion.     

Fear of people with mental illnesses: the role of personal and impersonal contact and exposure to threat or harm

Vignette and laboratory experiments suggest that negative reactions to people with mental illness are a direct consequence of their symptomatic behavior, but because of their poor external validity, these studies cannot tell us whether widespread negative public reactions to people with mental illness actually result from observation of symptomatic behavior. Focusing on perceived danger, we use a large national survey to test the "behavior hypothesis" in the general population. We reason that, if this hypothesis is correct, contact with people with mental illnesses should be associated with more perceived danger, and exposure to threat or harm should mediate this association. On the contrary, respondents with more personal and impersonal contact perceive people with mental illness to be less dangerous. Exposure to threat is more common among people with more contact, but this exposure explains very little of the variance in perceived danger. These findings do not support the conclusion that public fear of people with mental illness is due to the observation of violent behavior.