Reflections on conducting focus groups with people with learning disabilities

Abstract

This paper examines the use of focus groups as a methodological approach when undertaking research with people with learning disabilities. This is presented within the context of an ongoing research project that has principally adopted a participatory research approach and that is seeking to understand how people with learning disabilities conceptualise and understand their mental health. As such this paper may be seen as a critical case study of the ongoing methodological challenges of using focus groups, as well as exploring some of the thornier practical issues such as recruitment, attendance, data collection, ethical issues and matters of consent, facilitation, venue and payment in adopting this approach when undertaking research with people with learning disabilities. The paper concludes that the focus group approach is a legitimate methodological approach within the research process in the field of learning disabilities.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

“…Focus groups have been shown to be a viable data collection method with people with learning disabilities. [27][28][29][30][31]The inclusion criteria for the focus group participants were: they were considered able to contribute to a group discussion on palliative care, had given valid consent and had not experienced bereavement in the previous six months. The inclusion criteria for family carers were that they had been involved with a family member with a learning disability who had required palliative and end-of-life care within the past five years, had given informed consent and had not experienced a bereavement within the past six months.…”

“…[29] A pictorial approach similar to that taken in previous research [20]was used with the author's permission.…”

A conceptual model of quality service provision for people with intellectual disability and challenging behaviours: Enhancement and enrichment through service user and other stakeholder consultation

“…People with ID are often excluded from research because of cognitive and linguistic difficulties (Boyden, Muniz, & Laxton-Kane, 2012;Lloyd, Gatherer, & Kalsy, 2006); the potential for acquiescent and socially desirable responses (McGlaughlin et al, 2004); and difficulties "in making quantitative judgments" (Bergstrom, Hochwalder, Kottorp, & Elinder, 2013, p. 251). There is a growing body of research identifying focus groups as an appropriate method of data collection for people with ID that may assuage cognitive and linguistic difficulties (Boyden et al, 2012;Gates, 2011;Gates & Waight, 2007;McGlaughlin et al, 2004;Ramcharan, Nankervis, Strong, & Roberston, 2009;Stevens, 2006). Also, by bringing together numerous participants, potential perceptions of imbalance in the power relationship between moderator and participant was reduced and disclosure was encouraged (Krueger & Casey, 2000;Larson et al, 2004).…”

“…Pictures were shown to participants to provide focus for each open-ended question (Gates & Waight, 2007).…”

“…Video-recorded skits were used as this has been shown to reduce discomfort and provide focus when interviewing people with ID (Cunningham, McDonnell, Easton, & Sturmey, 2003;Gates & Waight, 2007;Ramcharan et al, 2009). Of the five skits, two reflected benign elements of daily life, such as having receiving assistance to make a cup of tea.…”