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.     

Exploring the value of involving experts-by-experience in social work research: experiences from Slovenia and the UK

The evidence base for the methodological validity of conducting participatory research is becoming established. This article reviews the experiences of two researchers undertaking Ph.D. studies in Slovenia and UK, respectively, and considers the value of involving service users and carers in social work research. The Slovenian research involved user-researchers who developed research tools and undertook qualitative research. The first author explores the co-researchers’ impact on the research process and its outcomes, identifying both individual and collective empowerment of the co-researchers. The English study involved people from diverse backgrounds, who developed a recovery training programme for carers of people with schizophrenia. The second author describes how the steering group, and the carers who participated in the programme were impacted by the research process and experienced a sense of empowerment and how they influenced the development of new knowledge through the reflexive cycle. The authors draw out the commonalities and differences in our research that add to the existing evidence base supporting the development of participatory inquiry. We conclude by affirming the value of user participation in research in leading to the empowerment of users, the development of new research perspectives, and in contributing to theory in social work research and practice.     

People with experience of long-term drug use and homelessness teaching with us: experts by experience participation in university social work education

ABSTRACT

Participation of experts by experience in university social work education is an important shaping factor for future social workers. This article presents two-year long experience in lecturing together with people who have had experience with long-term drug use, homelessness and have a lot of experience with being in a role of social work clients as well. The aim of the presented approach is to recognize their experience, opinions, and attitudes as an important source of knowledge in social work. Based on the research outcomes, the authors discuss topics such as: the role of experts, empowerment, breaking the stereotypes and ethical issues related to experts’ participation. They conclude with practical recommendations.     

An equality of condition framework for user involvement in mental health policy and planning: evidence from participatory action research

Discussions about user involvement in the mental health services tend to throw up four major areas of concern: the capacity of service users to participate, their lack of participation skills, the need for a positive organisational culture and the need for arenas of participation. This article presents evidence from participatory action research with Irish mental health service users which explored how they could more equally participate in advisory committees. Participants identified barriers to their equal participation due to unequal cultural, physical, mental and economic resources, time, power, ‘stigma’(prejudice) and lack of respect for their experiential knowledge and emotional expression. These barriers fall within the ‘equality of condition framework’ developed by Baker and colleagues. Enabling equal user involvement in strategic decision‐making requires more than arenas of participation – it requires comprehensively addressing service users’ structural disadvantages throughout the process of involvement.     

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.     

Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.     

Service user research in social work and disability studies in the United Kingdom

In recent years, there has been growing interest in the involvement of service users in research as well as in research studies that are led by service users. Although this interest in service users’ roles in research has been evident in both social work and disability studies, the two research disciplines have remained remarkably separate in the United Kingdom. This paper examines the epistemological underpinnings of social work research and disability studies research and explores the tensions, possibilities and power dynamics of collaboration between the two research disciplines in the United Kingdom. It concludes by outlining possibilities for social model approaches to social work research.     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

We did it together: a participatory action research study on poverty and disability

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.     

Involving Young Disabled People in the Research Process: The Experiences of the PIE Research Project Team

Young disabled people are still rarely involved in the research process, despite an increasing emphasis on their inclusion as participants. The Participation in Education (PIE) project examined how disabled children with little or no speech could be involved in their education. The project team worked with an existing group of young disabled people to develop ways in which they could take part in the research process. The group was involved in developing the methodology, group work, observation, commenting on findings and in the dissemination process. Their involvement undoubtedly enriched the research and the benefits of working with an established group were manifold.     

Making activism a participatory,inclusive and developmental process: a research programme involving mental health service users

Abstract

Understanding real-world experiences and issues is a priority for research funders, yet there are challenges in directly engaging with people for evaluation and investigation of the professional services they receive. Much professional work takes place within institutional restrictions, arising from legislation, policy and local practices. Collaborative research is therefore complex but relevant for improving services. This research programme started in 2002 with focus group research, led by occupational therapists based in a local National Health Service trust and a university, followed by eight further projects including a Photovoice project. This programme and our perspectives from reflections suggest we do not always know who we are, what we want or who cares about research outcomes, but it is important to embrace the potential of activism, to energise and focus people for positive action, wherever they are based.     

Improving research about us,with us: a draft framework for inclusive autism research

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.     

Recognition as a framework for ethical participatory research: developing a methodology with looked after young people

This paper reflects on a project which involved the authors working in partnership with a working group of looked after children and young people established by a small unitary local authority to develop a pledge defining what support, services and care looked after children can expect from them. The authors aimed to develop an approach which ensured that the young people’s voices were heard and also that the well-being of those involved as participants remained at the centre of the process throughout. We argue that Honneth’s theory of recognition, which identifies three forms of recognition as important to ensure that human beings feel assured of their dignity or integrity – in brief love, rights and solidarity – offers a useful framework for achieving this. The main principles which emerged were: (i) building the research around the young people’s existing relationships, (ii) respecting the group’s decisions and (iii) honouring the views expressed.     

Reflecting on participatory methodologies: research with parents of babies requiring neonatal care

This article concerns a study that examines the attitudes of parents, who have had babies in neonatal care, to sharing their babies’ routinely collected health data for research purposes. A participatory methodology was applied to the design of the study; a group of eleven parents who had all previously had babies in neonatal care were involved in designing a large-scale questionnaire survey. The article addresses the rationale for taking this approach, highlighting how it differs from the more common models of patient and public involvement. It presents the five themes that emerged from parents’ discussion in the course of engaging in the questionnaire design: legitimation, expertise, experiential knowledge, a different epistemology, power and control. How these shaped the design of the survey is employed in this article as a means of providing a commentary on the participatory research process itself. The article concludes by reflecting on whether participatory research can achieve its aims of promoting social justice when used for instrumental purposes such as the refinement of a data collection tool.     

‘I am not your nutter’: a personal reflection on commodification and comradeship in service user and survivor research

Abstract

This article offers some personal reflections from a mental health service user/survivor researcher working in English academia. It is a critical examination of what mainstream clinical mental health researchers and funders appear to need us to be, and what some in the service user and survivor movement perceive us to be. The discussion examines questions about commodification and public and patient involvement and contemporary challenges for service user and survivor research as a separate discipline operating within and beyond academia in England. The article concludes by exploring potential strategies for collaborative activism for service user and survivor researchers in academia based on the concepts of social capital and situated solidarity.     

Exploration of the Research Circle Methodology for User Involvement in Research on Home and Health Dynamics in Old Age

The aim of this study was to explore the usefulness of research circle methodology in the later stages of the research process. In an active collaboration with the researchers, participants, that is, users of research, discussed and prioritized research on home and health dynamics. Reflections, comments, and evaluations from both leaders and users were analyzed, applying content analysis. The usefulness of the research circle methodology from the users´ perspective reflected the importance of the content, form for research presentations, leadership methods, and the mix of participants. Research leaders reflect on the role as challenging and demanding, where the composition of users plays an important role for the usefulness of the methodology, as well as for practicalities, form, and content of the research presentations. Research circle methodology offers opportunities for knowledge translation; however, it is demanding and presents a range of challenges, such as the heterogeneity of the group, that needs further exploration.     

Environmental hazard and disabled people: from vulnerable to expert to interconnected

Why are disabled people disproportionately affected by the impacts of environmental hazard, and is it really only their relative poverty that makes them so vulnerable? What might disabled people contribute from their experience of negotiating barriers to designing responses to the challenges of environmental hazard? Can the lived experience of inter-dependency, as opposed to individual independence, contribute to the radical rethinking of our relationships with the environment, other sentient beings and each other? Drawing on a short scoping study, this article reviews the multiple causes of disabled people’s vulnerability, and goes on to ask whether the experience disabled people enables them to become valued contributors, rather than just members of a vulnerable group. We also explore possible reasons for the lack of inclusion and diversity within the environmental movement, and suggest that the disability and environmental movements might make a more common cause.     

Community based participatory research for public relations: Realizing potential for researcher-participant relationships

Relationship management theory and organizational-public relationships (OPR) continue to guide much of the research in public relations (PR) and espouse values of building collaborative and dialogic interactions for mutual benefit. Yet, OPR historically prioritized the use of relationships to reach organizational goals instead of public or community needs. Furthermore, the relationship paradigm has overlooked the significance of relationships between researchers and participants. This essay urges PR to prioritize researcher-participant relationships when engaging in research that concerns a community by using community-based participatory research (CBPR), an approach that values the contributions of community partners. We consider the foundations and critiques of relationships in PR and explain how CBPR can transcend some of these limitations by facilitating mutual benefit in methodological decisions. We then outline the benefits and challenges of using CBPR based on a review of studies across disciplines and the authors’ reflections on employing CBPR in their research. This work builds on the PR scholarship of relationships to offer concrete ways that researchers can utilize CBPR to address community needs and prioritize participants in the research process.     

Using a community-based participatory research approach to evaluate resident predictors of involuntary exit from permanent supportive housing

ObjectiveThe aim of this study was to determine an association between resident characteristics at time of entry to permanent supportive housing and exit status.MethodsA community-based participatory research (CBPR) approach was the guiding framework for the design, implementation and evaluation of this project. This retrospective observational study used an administrative data source from a local permanent supportive housing provider to compare resident characteristics among those who left housing voluntarily or involuntarily.ResultsThe population based sample (n = 407) was comprised of 51% males and 47% African-Americans with a mean age of 40 years (SD = 11.8). Involuntary exits (IEs) occurred in 40% of the sample (n = 166). IE was less likely with receipt of mainstream benefits, compared to employment income (O.R. = .546, p = .032). IE was more likely for residents self-identifying as African-American (O.R. = 1.56, p = .037) and when children resided in the household (O.R. = 2.03, p = .013).ConclusionsDespite limitations of community-derived data, findings suggest that supportive housing providers consider income source and family status when designing interventions to decrease IEs. A CBPR approach is a promising framework to guide evaluation efforts for supportive housing programs.     

Postmodern Research,Postmodern Practice: Studying the Barriers to Cyberliteracy Among Mentally Disabled Women

The conversation about the postmodern challenge to sociological practice is just beginning. Harding advocates a positive tension between the postmodern vision of an antiessentialist, antiepistemological future and the postmodern vision of successor science projects grounded in the epistemologies of marginalized communities. In this paper, I describe my study of barriers to cyberliteracy among mentally disabled women and how it has been informed by these two contrasting postmodern visions represented, respectively, by the work of Newman and Holzman (The End of Knowing: A New Developmental Way of Learning, Routledge, London, 1997) and Smith (Decolonizing Methodologies: Research and Indigenous Peoples, Zed Books, London, 1999).