Research methods with disabled populations

Although social work and related fields need more research involving people with disabilities, such studies can pose special challenges due to lack of understanding of disability issues, the disempowerment and invisibility of many who are disabled, and communication barriers. This article discusses ways of eliminating bias and maintaining ethical safeguards when designing and conducting research on people with disabilities. Participatory action research, which engages those studied in the design and conduct of research, is discussed as a model, as is the use of qualitative methods. Recent methodological innovations in survey research with deaf populations are also described and illustrated.     

Research Methods with Disabled Populations

Abstract

Although social work and related fields need more research involving people with disabilities, such studies can pose special challenges due to lack of understanding of disability issues, the disempowerment and invisibility of many who are disabled, and communication barriers. This article discusses ways of eliminating bias and maintaining ethical safeguards when designing and conducting research on people with disabilities. Participatory action research, which engages those studied in the design and conduct of research, is discussed as a model, as is the use of qualitative methods. Recent methodological innovations in survey research with deaf populations are also described and illustrated.     

A toolkit for accessible and respectful engagement in research

Social, scientific, and ethical factors underscore the value of respectfully including people with intellectual/developmental disabilities in research despite significant barriers to their research participation. In pursuit of this goal, we worked with two research advisors with intellectual/developmental disabilities to develop a qualitative study toolkit emphasizing accessibility, flexibility, variety, and responsiveness. The toolkit includes procedures and materials for recruitment, consent, interview locations and questions, breaks, and incentives. We recommend that future research utilizes insights of individuals with intellectual/developmental disabilities in research that impacts their lives, and that researchers systematically improve the use of procedures and toolkits.     

Using video vignettes in research and program evaluation for people with intellectual and developmental disabilities: A case study of the Leadership for Empowerment and Abuse Prevention (LEAP) project

People with intellectual and developmental disabilities (IDD) are often excluded from meaningful participation in research and program evaluation for various reasons, including protocols and measures that are inaccessible for people with varying cognitive and communication abilities. Emancipatory research models emphasize the importance of inclusive research practices. Video vignettes are a promising tool for research and program evaluation with people with IDD because they are standardized, they use visual imagery rather than relying on written or verbal communication, and they allow for distance from sensitive topics. The Leadership for Empowerment and Abuse Prevention (LEAP) project used video vignettes to evaluate a healthy relationship program for people with IDD. The authors discuss the process of piloting various protocols and measures, which then ultimately led to the use of video vignettes in the evaluation.     

Turning Social Return on Investment on Its Head

This article undertakes a critique of social return on investment (SROI), combining the existing research literature with an analysis of six case studies of supported social enterprises employing people with disabilities and other challenges that affect their access to the conventional labor market. The critique of SROI focuses on its positivist roots and its emphasis on one number, the SROI ratio. It also discusses the technical challenges in producing that number, including concerns about its reliability. The article presents the stakeholder impact statement, an approach that is rooted in interpretivism and attempts to understand the impact of enterprises through the eyes of multiple stakeholders. Unlike SROI, which is a supplement to conventional accounting statements, the stakeholder impact statement integrates financial and social impact data, thereby placing them on the same level of importance.     

Doing disability research in a Southern context: challenges and possibilities

Research on disability issues in countries of the South is primarily dominated by a focus on generating large scale quantitative data sets. This paper discusses the many challenges, opportunities and dilemmas faced in designing and undertaking a qualitative research study in one district in India. The Disability, Education and Poverty Project (DEPP) aims at exploring the role of education in the lives of young people with disabilities living in poverty. A central focus of the research is to engage with the young people with disabilities themselves and to understand how they construed their lives and experiences. This paper discusses three issues which are of central concern to the project: identification of the sample group, appropriateness of the research methods and, finally, an examination of the assumptions underpinning the research process.     

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.     

Advancing scientific knowledge through participatory action research

This paper aims to demonstrate the value of participatory action research (PAR) for advancing scientific knowledge as well as for solving practical problems. The article supports the argument through brief summaries of three PAR cases in industry: Norwegian shipping, Xerox Corporation, and the FAGOR group of the Mondragón cooperatives. While noting the practical gains achieved through PAR, the author concentrates particularly on the advances in substantive knowledge and theory that would have been unlikely to emerge out of more orthodox sociological research. The author suggests finally that wider use of participatory action research can have a stimulating effect upon the future development of sociology.     

“Inclusive Entrepreneurship”: A Process for Improving Self-Employment for People with Disabilities

ABSTRACT

This article describes the theoretical framework, processes, and outcomes associated with a U.S. Department of Labor, Office of Disability Employment Programs (ODEP)-funded project: “Start-UP NY.” Beginning in 2007, ODEP funded three Start-UP projects throughout the United States to test and demonstrate improved practices supporting entrepreneurship among people with diverse disabilities, including those with mental illnesses and veterans with disabilities. The New York project coined the term “Inclusive Entrepreneurship” to describe a model that promoted change at the individual, program, and systems level to improve the rate of small business development by people with disabilities. The author describes the genesis of the project, its intended effects and the lessons learned along the way that resulted in either course corrections or improvements, He then discusses how the project has been sustained and provides recommendations for replicating the project’s approach and methods in other United States communities or in other countries.     

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.     

Disability advocacy in Kinshasa,Democratic Republic of the Congo

This article frames a discussion of disability advocacy in Kinshasa by arguing the importance of disability rights legislation for the quality of life of people with disabilities and by outlining the Democratic Republic of the Congo’s situation as a nation characterized by conflict. The author provides an overview of the recent positive steps the government has taken to affirm the rights of its citizens with disabilities, discusses the strong disability advocacy movement based in the capital city of Kinshasa, and identifies some of the challenges to Congolese disability rights legislation.     

Community Participation Reconsidered

ABSTRACT

This paper describes the process of planning, developing, and implementing a community-based project with Hmong women in a large Midwestern city. Combining action and research to forge relationships, identify common goals and garner resources, the Hmong Women's Project applied principles of both feminist and participatory action research (PAR). In light of the successes and challenges of this ongoing project, we critically evaluate the oft-encouraged goal of “maximum community participation” in PAR projects by questioning common definitions of “community” and “participation.” We argue that the parameters of what constitutes a “community” and what counts for “participation” are inherently unstable, requiring constant negotiation of ideas, values, identities and interests among all who participate in a PAR project.     

Environmental Evaluations and Modifications to Support Aging at Home With a Developmental Disability

ABSTRACT

Increasing numbers of people with developmental disabilities are living into old age and are now residing in community-based housing, largely due to the deinstitutionalization movement. The overlay of age-related impairments onto pre-existing, lifelong disabilities puts this population at a magnified risk for premature behavioral limitations and loss of independence. This article describes a demonstration project designed to enable people with developmental disabilities to age in place. Interviews and observational assessments with 45 older adults with developmental disabilities were conducted in their community-based homes to identify potential barriers to aging in place. An Individualized Environmental Intervention Plan was developed for each study participant, recommending ways to solve problems and eliminate potential barriers. Individualized Environmental Intervention Plans were implemented to the extent possible through home modifications and assistive technology. Pre- and post-modification task performance and self-report revealed the positive impact that home modifications and assistive technology can have. The study demonstrates the need for ongoing evaluation and assessment sensitive to the needs of people with developmental disabilities and the unique characteristics of supported living settings.     

Relationships and the Research Process: Participatory Action Research and Social Work

Social science research methods are experiencing a paradigm shift in that participatory research methods, in many cases relegated to second-class status, are gaining credibility as valid and legitimate ways to engage in scholarly and solid research. In social work, participatory research is one more way social workers can engage with participants as partners in the process of generating knowledge and transforming society. This article discusses a particular type of participatory research called Participatory Action Research (PAR). PAR is explained and an example of how PAR has been used is offered. This article offers a discussion of how PAR is consistent with the core values of social work, especially those values of partnership, relationship, and social change. Finally, the article offers social work researchers a framework for engaging in liberatory research.     

Persons with profound intellectual disability and their right to sex

This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.     

Developing Independence: the experience of the Lawnmowers Theatre Company

This paper describes an action research project in which the Lawnmowers Theatre Company (a company of performers with learning disabilities) mounted drama clubs and a series of night clubs for people with learning disabilities. The objective of the project was to demonstrate that initiatives involving what might loosely be called 'drama' offer important opportunities for adult education and that night clubs for people with learning disabilities can be effective in providing new opportunities for social contact and also recognition for disability arts. All of these factors, it is argued, are important if people with learning disabilities are to be taken seriously as capable, interesting individuals with something useful to say. The project found high levels of participation and a range of skills acquisition.     

Culture and the Learning and Cognitive Development of Children with Severe Disabilities—Continuities and Discontinuities with Children without Disabilities

The dominant approach to children with disabilities is grounded in a biomedical model that assumes a direct relationship between the biological defect and the disability. From a cultural-historical point of view, this approach fails to notice how a child with a biological defect has to act in social institutions adapted to typical children. The aim of this article is to show how impairments arise from a developmental dynamic that includes both neurobiological and social conditions. Through empirical examples, the participation of children with severe disabilities is analyzed in relation to different practices and how they afford and develop particular cognitive activities, creating developmental possibilities or constraints that feed back on the child's learning. Distinguishing the different perspectives of children and professional adults increases our awareness of how conflicts between the participants' motives affect both participation and developmental conditions in practice. It is concluded that the learning problems of children with severe neurobiological impairments must be understood in terms of their social moderation and mediation.     

An approach to learning about social work with people with disabilities

The author shares some practice experience and personal reflection on her introduction to working with people with disabilities. Recognizing that the construct of "disability" is in the eye of the beholder, she shares an outline for one approach to an introductory course in working with people with physical, cognitive and developmental, and psychiatric disabilities. Common themes in practice and service delivery are discussed, as well as the unique role social workers can play in interagency collaboration.     

The Postadoption Needs of Adoptive Parents of Children With Disabilities

Adoptions of children with disabilities are considered special needs, due to the higher level of support needed pre- and postadoption by families and children for adoptions to succeed. Despite this fact, very few studies examine the specific postadoption experiences of families with children with disabilities. Using secondary analysis of a national survey of adoptive parents, as well as interviews and a focus group with adoptive parents in one state, this study examines families’ with adopted children with disabilities challenges and unmet needs after adoption, as well as the postadoption needs and experiences of adoptive families with children with developmental and intellectual disabilities and adoptive families of children with emotional, behavioral, and mental health disabilities. Findings indicate that families with children with disabilities do report higher rates of challenges and barriers to service access, and that this is particularly true in families with adopted children with emotional, behavioral, and mental health disabilities. Implications for research and practice are discussed.