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.     

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.     

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.     

Ascertaining the Perspectives of Young Children in Care: Case Studies in the Use of Reality Boxes

This article describes the use of an innovative method, reality boxes, to elicit the perspectives of children, ages four to seven years, in state care. Using examples from a broader research project based on children in Northern Ireland, which was concerned with their participation rights, the article considers how the children used the boxes to express their views. Informed by a child rights‐based approach, the article highlights the processes and practices involved and concludes by stressing the potential importance of this method, used in the context of this framework, in social work practice with young children.     

German Muslims and their engagement in participatory culture: reflections on civic and artistic contributions to the public sphere

This paper examines publics of young German Muslims. Case studies include the singer Huelya Kandemir, the theatre group Uma Lamo and the social network Zahnräder. By focusing on spiritual music publics, theatrical comedy publics and social publics, it tries a new approach to the way in which we understand minority public engagement. In addition to examining the concept of counterpublics, it utilizes the concept of participatory culture, which offers a relevant complement. The study argues that the publics of young German Muslims display multifaceted artistic and civic engagement, which can best be understood in terms of participation in cultural or civic productions and contribution to the wider German public. Features or effects of counterpublics, such as the countering of mainstream representations of minority identities and the offering of alternative discourses, are occasionally reflected in their activities.     

For the greater good? Ethical reflections on interviewing the ‘rich’ and ‘poor’ in qualitative research

ABSTRACT

There is increasing emphasis on understanding economic advantage alongside disadvantage – on studying both ‘poverty’ and ‘riches’. This trend prompts and requires new ethical reflection. I argue that in qualitative interview research, a clearer distinction needs to be drawn between ethical commitments to individual research participants, and the group(s) to which they belong. This distinction is often elided in ethics guidelines and when researchers discuss their own work. Attending to the distinction highlights a symmetrical ethical dilemma: researchers studying disadvantage are often motivated to further the interests of the wider group to which their participants belong, yet the study itself risks eliciting or exacerbating negative experiences or identities amongst participants themselves. Conversely, the process of studying advantage frequently bolsters the positive identities or experiences of individual study participants, even as the research findings challenge or subvert the interests of their group.     

Researching an-'other' minority ethnic community: Reflections of a black female researcher on the intersections of race,gender and other power positions on the research process

There is a dearth of discussion on the methodological dilemmas faced by minority ethnic researchers who research minority ethnic communities of which they are not a part. The paper explores the political and ethical issues involved in a black woman researching South Asian women's lives, analysing the research process, and focusing on issues of choice of research group, access and placing. This paper represents a reflexive account of the research relationships developed in longitudinal qualitative doctoral research between a black (of African descent) postgraduate student and sample of 19 South Asian female student teachers in England and draws on literature of women interviewing women and ethnic or 'race' matched research. The methods employed were documentary analysis, observing meetings, a focus group, two student questionnaires, one-to-one interviews with staff and group and one-to-one interviews with South Asian female student teachers. It is argued that whilst social characteristics such as gender, language, religion and culture are important in determining notions of commonality and difference, a shared experience of racism between the researched and the researcher may affect the research relationship most significantly.     

Reflexivity in Practice: Developing a New Attitude as Part of Teaching and Engaging in Participatory Research and Development

The position taken in this article derives from a reflexive self-discovery of the assumptions underlying my teaching and conducting of social research over the years. Undoubtedly, as qualitative approaches continue to evolve in recognition of the plurality of persons, cultures, and ways of knowing, participatory research and development will increasingly require of teachers and researchers new self-knowledge, sensitivities, and humility. Using my experiences as the context for discussion, the article examines existing definitions and the place of participatory research and development within the qualitative paradigm and posits that there is room for radical reflection on the value of inclusionary processes in both the teaching and practice of social research and development.     

Case-based methods and agent-based modelling: bridging the divide to leverage their combined strengths

Two leading camps for studying social complexity are case-based methods (CBM) and agent-based modelling (ABM). Despite the potential epistemological links between ‘cases’ and ‘agents,’ neither camp has leveraged their combined strengths. A bridge can be built, however, by drawing on Abbott’s insight that ‘agents are cases doing things’, Byrne’s suggestion that ‘cases are complex systems with agency’, and by viewing CBM and ABM within the broader trend towards computational modelling of cases. To demonstrate the utility of this bridge, we describe how CBM can utilise ABM to identify case-based trends; explore the interactions and collective behaviour of cases; and study different scenarios. We also describe how ABM can utilise CBM to identify agent types; construct agent behaviour rules; and link these to outcomes to calibrate and validate model results. To further demonstrate the bridge, we review a public health study that made initial steps in combining CBM and ABM.     

Making Connections: Community Organizing,Empowerment Planning,and Participatory Research in Participatory Evaluation

This article shows the intersections of participatory research, popular education, empowerment planning, and community organizing with participatory evaluation. It argues that a truly successful participatory evaluation involves participants in guiding and even conducting the research, doing a process of self- and program study, creating plans for change, and organizing themselves for implementing these plans. Next, the chapter shows how these elements played out in a participatory evaluation of a community organizing training and technical assistance project in Toledo, Ohio. The first year of the project was facilitated by participatory evaluation that helped identify early successes and problems so participants could make programmatic changes early in the process. The telling of the story also develops practices of participatory evaluation, including planning the evaluation, doing the research and adapting it to changing conditions, uncovering creative tensions, participatory validity checking, and linking the process to planning and action. The chapter concludes with some lessons for participatory evaluation practice.     

The personal is political: a feminist reflection on a journey into participatory arts-based research with sex worker migrants in South Africa

ABSTRACT

This article offers a personal reflection of my journey into participatory arts-based research with sex work migrants in South Africa. It begins by sharing some background information of how my own experience as a migrant woman, and my layered (sometimes conflicted) identities, have continued to shape and influence much of my scholarly work, including my commitment to engaging in research that supports (or at least tries to support) social justice. Through this article, I offer an example of how the ‘personal is political’ is entwined in feminist values of research and engagement. Those who experience the issues under investigation must be considered equal partners in research processes. Collaborative forms of knowledge production can support social justice, particularly if efforts strive to shift the centre from which knowledge is traditionally generated and disseminated.     

Poor Mothers and Habits of Hiding: Participatory Methods in Poverty Research

Poor mothers have long‐standing habits of hiding their lives in response to punitive authorities and stigma. We identify practices of hiding daily life, and we describe participatory research approaches for and ethical concerns in learning more about poor women's critical insights and survival strategies.     

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.     

Ratings and rankings: reconsidering the structure of values and their measurement

Despite extensive discussion and analysis over the past three decades, researchers are still divided over the preferability of rating or ranking systems for measuring values. However, the debate originates from the false premise that one method must be used to the exclusion of the other. A conceptualization of the value structure that uses characteristics of both rating and ranking systems opens up theory and research to a more complex understanding of values. Data from the 1995–1997 World Values Survey demonstrate how using both rating and ranking systems can lead to distinct and equally valid conclusions about the differences in value importance among the nations of the world. This suggests that either method by itself provides an incomplete understanding of the value structure. While the potential methodological complications of using both ratings and rankings must be explored, the additional cost would be a productive investment for moving beyond the rating–ranking impasse.     

Engaging Experts: Expanding Participation and Enhancing Research in Chinese Eldercare Institutions

Due to the myriad factors straining China’s traditional family-based eldercare system, today unprecedented numbers of older adults are turning to institutions for caregiving needs. As researchers and policy makers organize conferences, analyze trends, and allocate resources, the subjective experiences of elders themselves are often forgotten or ignored. While providers recognize that institutionalized elders are at an increased risk for mental health issues, most cite personnel and resource shortages as insurmountable barriers to provision. Using examples from ethnographic research in Chinese eldercare institutions, this article examines the link between participation and mental health for contemporary Chinese elders and makes a case for expanding the role of elders in research in order to improve both the experience and understanding of institutional eldercare.     

Research initiation based on idea-circles: from research object to co-actor

This article details an evaluation of a research project based on participatory research methods organized by the Swedish Disability Federation from 2008 to 2011. In Sweden there has been a lack of productive dialogue with the traditional academic world and the question was raised whether proposals for future research would be different if disabled people formulated them. Nine idea-circles with disabled participants and invited researchers from fields of interest close to the participants produced ideas, developed out of the life experience of being a disabled person. These ideas were developed into 72 research drafts that often reflected key advocacy areas, rather than operationalized research issues. The adjustment from the familiar discourse of political struggle to discussion of research was a complicated process for many. When asked to prioritize among areas for research, the representatives from the disability movement chose areas that are not stressed in mainstream disability research in Sweden.     

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.     

Community-Based Research and Participatory Change: A Strategic,Multi-Method Community Impact Assessment

This article presents a community impact assessment that was triggered by a proposed land development project that had the potential to dramatically change the social fabric and quality of life in a neighborhood whose history dated back several generations. Developers of the project never asked, “How would this project impact the surrounding neighborhood?” Community planning faculty and student researchers embarked on a 5-month effort to answer this question. This case study presents this research and points to the usefulness of community impact assessments for neighborhoods that are faced with development where the future of their community is at stake.     

Overcoming fieldwork challenges in urban health research in developing countries: a research note

With rapid growth in the global urban population over the next two decades, health will increasingly have an urban bias. The picture of public health is particularly complex in African cities, where rates of urbanisation, poverty and inequity are high. This paper identifies the main data collection problems encountered within a panel study in low‐income areas of Johannesburg, with special emphasis on sampling, access and partnerships. The paper will be of relevance to anyone considering research in the cities of developing countries, especially in Africa.