Aims and methods
The importance of including socially excluded groups in health and social care research has become increasingly recognised, and is underpinned by recent UK government policy (see, for example, Inclusion Health, Cabinet Office, 2010). There is an acknowledged need for more sophisticated and flexible responses to improve access and quality of services for socially excluded groups. An integral part of this improvement is the inclusion of the views of socially excluded groups in both consultation and research about health and social care. The definition of seldom heard or socially excluded is not straightforward and, at its broadest, can include the long-term unemployed, those in severe and persistent poverty, people experiencing domestic violence, care leavers, ethnic minority groups, ex-servicemen and women, people living in remote areas, and those who do not meet the necessary eligibility criteria for the statutory provision of care interventions, i.e. self-funders. More commonly, the focus is on those considered to be most vulnerable: homeless people, traveller groups, sex workers, people with intellectual disabilities, refugees, asylum seekers, and prisoners or ex-offenders. Those with long-term health conditions (an illness or condition which requires treatment, management or support for the rest of someone’s life) may be seldom heard because their long-term condition (such as an intellectual disability, dementia, stroke, mental health condition, etc.) makes participation more difficult. They may even have more than one long-term condition which further impacts on their participation in research, and they may also be part of one of the socially excluded groups noted above which further exacerbates their exclusion from research.
The aim of this rapid review was to explore the recent literature about the barriers and facilitators to including seldom-heard groups as participants in research related to health and social care. Three core questions which have relevance to policy and future research practice guided this review:
- What do we know about whose views and experiences are excluded from research, and how often does this happen in health and social care research?
- Why are some people’s views and experiences not heard?
- What methods are there for facilitating people’s views to be heard, and are these facilitators population specific or can they be applied to other groups and guide good research practice more generally?
An initial scoping exercise was carried out to identify and refine the key search terms. The review covered literature published in peer-reviewed journals for the period 2001 to 2011. All papers included were relating to UK studies and had been published in English. The full extraction process incorporated 18 databases and hand-searching of appropriate journals. A total of 2,031 potentially relevant studies were identified and, following screening by title, 537 papers were identified and the abstract (and in some cases, the full paper) reviewed. This resulted in 107 papers being identified for extraction. After application of quality criteria, a further 24 papers were excluded, and the remaining 83 studies were extracted into tables, with mapping and narrative synthesis undertaken.
Outputs
Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson, Rebecca Whelton (2012) Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Populations, Full report, QORU working paper 2850, Canterbury / London. [Link]
Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson, Rebecca Whelton (2012) Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Populations, Summary report, QORU working paper 2849, Canterbury / London. [Link]
Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson, Rebecca Whelton (2013) Engagement of people with long term conditions in health and social care research. Barriers and facilitators to capturing the views of seldom-heard populations, Easy Read version, QORU working paper 4528, Canterbury / London. [Link]
References [Link]
A journal article is also in submission.
Research Team
Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson and Beckie Whelton