Involving people with communication disability in research in Uganda: A response to the World Report on Disability

Abstract

The World Report on Disability recommends more involvement of people with disabilities in research. However, the lead article by has not addressed issues relating specifically to the involvement of people with communication disabilities in research. This deserves careful consideration. Involving people with communication difficulties in research forefronts discussion and collaboration, and requires researchers to focus on the priorities and needs of people with communication disabilities in their locality. Taking a participatory approach to research can develop a rich, context-specific understanding of communication disabilities. This paper uses the first author's experience preparing for a participatory research project in Uganda, to outline, particularly with reference to the Majority World, the benefits and challenges of engaging people with communication disabilities in research.

Keywords::

• Cross-cultural
• participation
• World Health Organization (WHO)
• World Report on Disability
• Africa
• Uganda
• communication
• research

Introduction

“Involve people with disabilities” is one of the recommendations of the World Report on Disability (World Health Organization and The World Bank, 2011, p. 265). Wylie, McAllister, Davidson, and Marshall (2013) outline some of the ways in which people with communication disabilities (PWCD) can be involved in training speech-language pathologists (SLPs) and in service development. Participation by PWCD in research is not mentioned by Wylie et al. (2013), although the World Report on Disability states that there should be more involvement of people with disabilities in health research (WHO, 2011). A growing number of research studies (often using qualitative research approaches) in the field of speech-language pathology seek to investigate the views and opinions of PWCD (Brown, Worrall, Davidson, & Howe, 2012; Le Dorze & Brassard, 1995; Parr, 1994, 2007). However, there remains a tendency to rely on the reports of caregivers, despite the evidence that they may have different perspectives from individuals with communication disabilities themselves (Carlsson, Paterson, Scott-Findlay, Ehnfors, & Ehrenberg, 2007; Cruice, Worrall, Hickson, & Murison, 2005).

This paper provides an overview of the rationale, key benefits, and ways of actively involving PWCD in research. It highlights some of the challenges that need to be addressed creatively to ensure that PWCD are meaningfully involved in research that influences practice, policy, and the lives of PWCD, their families, and communities. Some of these issues are illustrated by reference to the development of a participatory research project in Uganda, which was designed by the lead author who had previously spent 2 years working as a clinician and lecturer at Mulago Hospital and on the speech-language pathology degree program at Makerere University, Uganda.

Understanding participation within research

All research with people who have experienced acquired communication disabilities necessarily involves a degree of participation. What distinguishes participatory research is the amount of power exercised by the participants (PWCD) on the formulation of the research question, the research process, and how the research findings are used. An array of methods can be employed in participatory research, for example, interviews, focus groups, public meetings, and role plays. It is not these methods that define participatory research, but rather the level of participant influence throughout the process. In traditional research relationships PWCD are subjects, and as such have little or no active influence over the setting of research questions, interpretation of findings, or dissemination of results (Cornwall & Jewkes, 1995; Kitchin, 2002). Research questions and objectives are based on the agenda of the (usually non-disabled) researcher and funding agencies. In contrast, participatory research entails “involving all potential users of the research and other stakeholders in the formulation as well as the application of research” (Green & Mercer, 2001, p. 1927). Emancipatory research takes this one step further. Research is directed and carried out by PWCD in ways that promote their empowerment and emancipation from oppressive power structures, organizations, or relationships (McLeod, J., 2011; Tregaskis, C. 2004)). Researchers “put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose” (Oliver, 1992, p. 111).

This approach assumes that power can be shared and that participation is desired by all. A more nuanced understanding is provided by Goodley (2011), who suggests that research following an emancipatory model does not automatically lead to emancipatory results, and that academic-led theoretical pieces may result in the development of research with emancipatory potential. Oliver (1997), reflecting on his years of work as a disability researcher, suggests that true emancipatory research is difficult to achieve.

Mapping the project in Uganda

Working in Uganda for 2 years, the lead author became aware of the lack of research, political awareness, and services for PWCD. Keen to avoid a situation in which service delivery models and interventions were imported from the Minority World into Uganda, without consideration of their suitability, she embarked on a part time PhD study. The study aimed to investigate the experience of adults with acquired communication difficulties and their families in Uganda. A number of factors influenced the first author's choice of research topic. These included an awareness of the growing numbers of adults in Uganda with acquired brain injuries (Altevogt, Hanson, Ssali, & Cuff, 2010; Ntusi & Bongami, 2009), the lack of post-acute care for people with acquired disabilities, and the interest and experience of the lead researcher.

An emancipatory approach to the research was considered but, despite engaging with support groups and PWCD in Kampala, no active research projects or ideas were discovered. Indeed, there was a paucity of research into communication difficulties in Uganda. Reasons for this are not clear, but the authors speculate that, due to the nature of communication disabilities, engaging in research or advocating for research may be more challenging for PWCD than for other disability groups. Furthermore, research may not be considered a priority for many PWCD in the Majority World, where issues of meeting ones basic needs necessarily predominate. Additionally, reflections of speech-language pathologists (SLPs) and PWCD in Uganda suggest that communication disabilities are often poorly understood. Consequently it was decided that a participatory approach would be more viable, enabling the lead author to solicit and encourage participation and initiate discussion around research ideas, methods, and outcomes.

One of the reasons for taking a participatory approach was to mitigate the impact of the different culture, language, and life experience of the lead researcher on the research process and interpretation of findings. It was acknowledged that the lead researcher, as a white, monolingual, English-speaking educated woman, would face significant barriers to gaining a full understanding of the experience of adults with acquired communication disabilities in Uganda. Ensuring PWCD in Uganda were actively involved in every aspect of the research process was one of the approaches taken to overcome these barriers. However, challenges related to being an outside researcher remain, and may be multiplied when the researcher is a white woman based in the Minority World undertaking participatory research in the Majority World. One such challenge is the legacy of colonialism. Internalized oppression, defined by Minkler (2004, p. 689) as “people's acceptance of the negative messages they receive about their own race and ethnicity”, and racism on the part of the researcher, institution, or participants are identified consequences of colonialism which may impact upon the success of participatory research. An additional challenge to collaboration may occur if the researcher is a visitor to, not an inhabitant in, the country where the project is being carried out. Finding time for genuine collaboration can be challenging, especially when participants also have constraints upon their time and limited access to the internet and meeting venues.

Nama and Swartz (2002) identify a further challenge commenting on the scepticism and distrust that the outside researcher may face, and noted that, when embarking on research in South Africa, they were “very much aware of the fact that in the past researchers (who were mainly White) would collect data on impoverished people without making any contribution to improvement of their lives” (Nama & Swartz, 2002, p. 289). The lead researcher was keenly aware of the existence of this perception within Uganda, and this provided a further impetus for taking a participatory approach, which focuses more on research for action, than traditional approaches which tend to focus on research for knowledge (Carr & Kemmis, 1986).

A participatory approach involving local PWCD enables researchers to engage more fully with cultural, social, economic, and environmental factors that are known to influence the experience, understanding, and needs of people with disabilities (Grech, 2008; Hartley, 2004; Karangwa, 2010; Ma, Threats, & Worrall 2008). Participatory research offers local SLPs and policy-makers the opportunity to examine their own circumstances, to test best practice, and to adapt practice to the needs of the local community.

Therefore, despite the challenges a participatory approach was decided upon to research the experience of adults with acquired communication disabilities and their families in Uganda. In preparation, the lead author held informal discussions about the proposed research with five adults with acquired communication disabilities who had previously accessed the speech and language therapy clinic at Mulago Hospital. Two participants had sustained traumatic brain injuries, two had cerebrovascular accidents (CVAs) and one had speech difficulties of a likely but undiagnosed neurological cause. Participants were invited to become members of the research advisory group. Interviews and meetings were held with each participant to discuss their experiences of having an acquired communication disability, their priorities for support, and their views on the proposed research project. When asked what research outcomes they prioritized for PWCD, they called for public awareness campaigns and community sensitization. This desire for increased public awareness was borne from their experiences. One man described how his friends and community perceived him as “mad” because he had difficulty speaking. Another described the hurt he felt as a result of family members laughing at him because of the way he talked. He reported that family and friends did not take his communication disabilities seriously because they presumed he had “flu”, and would soon recover. The discussions revealed that lack of community awareness and understanding were impacting on the lived experience of disability for these PWCD in Uganda. It was in this area that PWCD identified the need for change. Understanding these priorities shaped further discussions around the research approach including dissemination of findings through the use of radio plays, community meetings, and workshops.

Understanding communication disability through participatory research

Participatory qualitative research permits the development of a deeper understanding of the experience of communication disability and how areas of activity and participation are perceived and addressed. It enables an investigation of the social, cultural, and economic factors which may mitigate or problematize the experience of communication disabilities. Researchers are encouraged to engage in research that will reveal rich, context-specific understanding, even if that is at the expense of generalizable principles or interventions.

Gaining an understanding of the different conceptualizations of communication disabilities in the Majority World is acknowledged as an important pre-requisite to acquiring an accurate representation of the number of PWCD worldwide (Wylie et al., 2013). The comment from one of the Ugandan clients that his family thought he had “flu” highlights how some communication disabilities may not be reported or acknowledged by people who are affected by them. Using a participatory approach to research would aid understanding of the conceptualization of communication disabilities, and inform the development of more robust tools to facilitate accurate estimates of the number of PWCD. Participatory research also allows research capacity to be developed with, and shared by, PWCD themselves.

Involving PWCD in research in the Majority World

So how can researchers ensure that PWCD become more involved in research? If individuals are likely to volunteer time and energy, research needs to be directed at the priorities and concerns of PWCD. The financial impact on potential participants, particularly in countries with no state support, needs to be considered carefully. Researchers and PWCD need to agree in what capacity PWCD are involved in the project. PWCD may take different roles, for example consultants, advisors, or co-researchers. Having a formal role within the project may aid engagement and participation and benefit the individual financially and personally, for example with regards to increased self-esteem, community status, and new contacts. Formalized roles may also change community perceptions about the roles PWCD are able to adopt. Research methods which result in tangible change, for example the trial of new interventions, training packages, or public awareness campaigns, may be more appealing and directly beneficial to participants than traditional “knowledge seeking” research which has no direct practical component.

The potential gains of participatory research are great, but a number of challenges must be addressed in order to involve PWCD in all aspects of the research process (Damico, Simmons-Mackie, Oelshlaeger, Elma, & Armstrong, 1999; Lloyd, Gatherer, & Kalsy, 2006). How to engage PWCD in research when communication is inherently difficult is perhaps the most obvious challenge. A number of different approaches and strategies have been put forward by other researchers to attempt to overcome this difficulty, and may involve using ethnographic and observation methods with people with severe communication disabilities (Carlsson et al., 2007; Le Dorze & Brassard 1995; Luck & Rose, 2007; Parr, 2007), or using Supported Conversation strategies in discussions and interviews (Kagan, 1998). Inviting PWCD to engage in potential research projects was found to be difficult in Uganda where individuals were unaccustomed to research processes, aims, or potential benefits. Therefore, attention must be paid to how research projects are described and participants recruited. Irrespective of the approach taken, engaging in research which results in a meaningful impact on the lives of individuals with communication disabilities and their families is a challenge and not a forgone conclusion.

Participatory involvement in research can result in a legacy of learning and public awareness which is far more effective in stimulating social change than research using traditional approaches (Barnes & Mercer, 2003; Kagan, Duckett, Lawthom, & Burton, 2006). Broadening the focus of participatory research to include community members as well as affected individuals and families could result in change being driven by those around PWCD, as well as the individual with the impairment. The need to engage PWCD, their families, and communities in research is evident if, as the lead article states, new and novel services are to be developed that better meet the needs of people with communication disabilities.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.