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Engagement of people with long-term conditions in health and social care research: barriers and facilitators to capturing the views of seldom-heard populations
- Authors:
- BEADLE-BROWN Julie, et al
- Publisher:
- Quality and Outcomes of Person-centred Care Policy Research Unit
- Publication year:
- 2012
- Pagination:
- 56
- Place of publication:
- Canterbury
Explores the recent literature on barriers and facilitators to including seldom heard groups as participants in research. Eighteen databases were identified for the final search, and 83 papers included in the review. These predominantly focused on four categories as being difficult to reach or engage in research: intellectual disability, older adults, in particular those with dementia, mental health conditions and minority ethnic groups. Almost half the papers reviewed focused on those with intellectual disabilities. A key barrier to inclusion was the assumptions made by various people (researchers, gatekeepers, ethics committees, funders and so on) involved at each stage of the research process, including research design, ethics and recruitment. The paper suggests that there has been limited progress in developing methods to systematically include these groups in recent years and that there is a need for more research exploring the use of alternative techniques for eliciting responses. (Edited publisher abstract)