Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

Supporting people with intellectual disabilities to take part in focus groups: reflections on a research project

This paper discusses how support offered to people with intellectual disabilities who take part in research might affect the resultant data. People with intellectual disabilities from a long‐stay hospital, a day centre and a self‐advocacy group, all in the UK, participated in focus groups during a research project on nurse advocacy. Their supporters were staff employed by those services who were familiar with and to the group members. The support given to participants reflected the ethos of the services involved, relating either to the medical or the social model of disability. The paper argues that the philosophy of care influencing supporters of research participants with intellectual disabilities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification or cause contamination of the resultant data.     

Unanticipated ethical issues in a participatory research project with individuals with intellectual disability

The conduct of a participatory research investigation into the everyday literacy of adults with intellectual disability within the context of a PhD thesis highlighted issues related to the ethics of participatory research and the need to revisit and reconsider ethical guidelines around working with individuals with intellectual disability. Tensions were identified between participatory research ideology and the reality of research experiences, with additional issues arising due to disability in the first author.     

Ethical challenges of life story research with ex‐prisoners with intellectual disability

This paper outlines the ethical considerations when engaging in life story research with ex‐prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle‐based ethics. The significant disadvantage experienced by ex‐prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle‐based approach.     

Rights discourses in relation to education of people with intellectual disability: towards an ethics of care that enables participation

In this paper we argue that human rights approaches for intellectually disabled people have failed to recognise the complexity of rights claims made by and on behalf of this group. Drawing on a research project into discourses of education for intellectually disabled people in the Eastern Cape, South Africa we discern three rights discourses; namely, rights to full participation, rights to special services and rights to protection. These draw off a social model, a medical model and a protective model, respectively. We note that these discourses may be set up in contestation with each other. However, we argue that they can be seen as complementary if viewed within an ethics of care that enables participation. Within this conceptualisation, participation is viewed within relations of care but is subject to a critique that examines the role of context and disciplinary power in constructing dependency.     

Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers

Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explores views on the wider aspects of voting against the backdrop of the Scottish referendum using focus groups involving people with intellectual disabilities (n = 12), family carers (n = 7) and paid carers (n = 5). Findings revealed that people with intellectual disabilities had similar concerns to the general population about the referendum. Regarding voting, all groups identified the need to discuss issues and for practical support and accessible information to ensure informed choices were made when voting.     

The dynamics of support over time in the intentional support networks of nine people with intellectual disability

This paper describes the dynamics of support observed in the networks of nine adults with intellectual disability, developed by families who had committed to achieving a ‘good life’ for this person. Network members, including the person with a disability, participated in this longitudinal ethnographic study. Three principles that underpinned their work were positive and respectful relationships, mentorship and providing opportunities and expectations. Participants worked actively with other network members to develop higher levels of autonomy and social participation.     

Overprotection in the lives of people with intellectual disability in Malta: knowing what is control and what is enabling support

A study of overprotection in the lives of persons with intellectual disability in Malta was carried out on the principles of inclusive research. Focus groups were held with people with intellectual disability, parents of people with intellectual disability, and those working with persons with intellectual disability. Overprotection is a disabling barrier. Its effects were identified in employment, leisure time, intimate relationships, and the use of public transport, money, and mobile phones. People with intellectual disability who experience overprotection live very structured lives. They cannot develop their skills, abilities, and potential. Furthermore, they cannot live their life on their own terms, but on terms determined by others. This creates a sustained dependence on others, especially the family. It is important that a balance is achieved between protection and enabling support. Persons with intellectual disability should be given the support they need to express their wishes and act on them.     

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.     

The employment situation of people with disabilities in Lebanon: challenges and opportunities

This article presents the findings of a study on the employment situation of people with disabilities in a rural region in Lebanon. The study was conducted as one of the activities of a community development project that saw the establishment of a job centre for people with disabilities. The majority of the study's 200 paricipants were unemployed, and many had never been employed. Other participants were mostly self-employed, with many of them working from home. The article discusses obstacles to finding and keeping a job and ends with recommendations for change at the level of community intervention, policy and research.     

Changing the method of working with homeless people: a photovoice project in Italy

In Italy, many organizations are experimenting with the Housing First (HF) model to promote a change in how they work with homeless people. This change creates some difficulties, especially in promoting freedom of choice in people involved in the HF programs. This study explored the definition of “home” in homeless people’s points of view. The study participants were 5 homeless men involved in a HF program called “The Road Home” implemented in the city of Padua. Data were collected using Photovoice, a photographic method based on participatory action research. During the project, the participants took photographs to illustrate their definitions of “home” and then engaged in a critical dialogue about the images represented in the photographs. The results of the study showed that occupants identified the home as being related to family, friendship, cohabitation, and hope for the future. The Photovoice project provided an opportunity to promote discussions that revealed the true needs of the people involved, and in the meantime, it brought a change to the program and to the community, in addition to promoting the HF model in the community.     

Promoting choice and control in residential services for people with learning disabilities

This paper discusses the gap between policy goals and practice in residential services for people with learning disabilities. Drawing on a nine month ethnographic study of three residential services, it outlines a range of obstacles to the promotion of choice and control that were routinely observed in the culture and working practices of the services. Issues discussed include conflicting service values and agendas, inspection regimes, an attention to the bigger decisions in a person's life when empowerment could more quickly and effectively be promoted at the level of everyday practice, problems of communication and interpretation and the pervasiveness of teaching. We offer a range of suggestions as to how these obstacles might be tackled.     

Beyond friendship: the nature and meaning of close personal relationships as perceived by people with learning disabilities

Many people with learning disabilities aspire to having friends and to forming close relationships. Often the latter are discouraged, but for those who enter into such a relationship little is known about the meaning and value it brings to their lives. The aim of this study was to gain an insight into the close relationships of eight couples with learning disabilities using a combination of dyadic and one-to-one interviews. Data collection and analysis was informed and guided by the core principles of grounded theory. Five significant types of benefits were identified from having close personal relationships, namely: comradeship, a sense of contentment, availability of mutual support, coping with the ups and downs of relationships, and a continuing commitment. Service providers could do more to facilitate the formation of close meaningful relationships, and strategies for doing this need to be identified and evaluated.     

The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews,values and mythologies

Intellectual disability is commonly conceptualised as stigmatised identity with which one has to live. However, within the literature the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability, with an emphasis on the identities and social roles of people with an intellectual disability. Informed by a contextualist perspective, this research was conducted within a participatory framework. The co-researchers involved in this research were 18 members of an advocacy agency. Photovoice and conversational interviewing were used to collect data and causal layered analysis was used to deconstruct the data. Analysis of the interactions that emerged across the causal layers revealed a complex dynamic of worldviews which served to construct people with an intellectual disability as incompetent, inherently different and not quite human. For genuine, transformative change to occur, developing an awareness and understanding of social processes, such as dehumanisation, is crucial.     

Politics of geographic exclusion: deinstitutionalization,hegemony and persons with intellectual disability in Israel

Deinstitutionalization is a core policy for the development of services for people with intellectual disabilities (ID) in western countries. Nonetheless, although a western country, deinstitutionalization is not well advanced in Israel. In order to shed light on this phenomenon, we explore the hegemony of ID as reflected in Israeli legislation. The analysis shows a biomedical hegemony; ID is depicted as a form of medical and social deviance. Israel’s legislation reflects paternalistic views of persons with ID, who are largely seen as vulnerable objects of pity, to be cared for and protected.     

Residential care for children with intellectual disabilities in the social protection system in Serbia

This paper presents and discusses the characteristics of the social protection of children with intellectual disabilities who are placed in children's homes in Serbia. It draws on a survey that covered the entire population—586 users in all five institutions for children with intellectual disabilities who resided there in 2009. The analysis shows the heterogeneity of users in relation to age and degree of intellectual disability, their long-term stay in homes, the inadequate structural and functional standards, and insufficient health care. Residential care becomes the most common form of permanent rather than temporary care. These findings suggest the need for a number of strategies to be adopted, and the paper concludes by outlining potential ways forward.     

Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices

The focus of this article is participatory research with and by people with learning disabilities. Drawing on discussions that took place across a series of seminars, we use the concepts of space and boundaries to examine the development of a shared new spatial practice through creative responses to a number of challenges. We examine the boundaries that exist between participatory and non-participatory research; the boundaries that exist between different stakeholders of participatory research; and the boundaries that exist between participatory research with people with learning disabilities and participatory research with other groups. With a particular focus on participatory data analysis and participatory research with people with high support needs, we identify a number of ways in boundaries are being crossed. We argue that the pushing of new boundaries opens up both new and messy spaces and that both are important for the development of participatory research methods.     

Reflections on doing participatory research in health: participation,method and power

The author has reflected on her experience in facilitating three participatory research (PR) projects to identify key issues surrounding participation, method and power. The three PR projects in health, all undertaken in the same region in southeast Australia, assessed the needs of women who have experienced breast cancer, evaluated an Indigenous healthy lifestyle programme and developed and documented a model of coordinated care by a consumer group. In particular, the three participatory projects suggested that participants do not always want to maximise their own participation and may prefer external researcher involvement – relationships, confidentiality, anonymity and time‐impacted perspectives of participation. In one study, quantitative methods were selected and time and previous knowledge of research shaped participants' selection of method. In the projects, power relations were complex and issues of negotiation, inclusion, quality of research, agendas, roles and integrity are discussed. The lessons learned here are that participatory researchers can be open to differing levels of participation and methods while also comfortable with sharing decision‐making in research, even if it alters the research outcome.