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Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurological conditions
- Authors:
- HOPPITT Thomas, et al
- Journal article citation:
- International Journal of Social Research Methodology, 15(6), 2012, pp.485-495.
- Publisher:
- Taylor and Francis
Little is known about health and social care experiences of patients with rare long-term neurological conditions such as Huntington’s disease, motor neuron disease, Charcot Marie Tooth disease, dominantly inherited ataxias, progressive supranuclear palsy, post polio syndrome and multiple system atrophy. Added to this black and minority ethnic service users have historically been described as ‘hard to reach’ for research. Evidence suggests that a variety of recruitment methods need to be used if this situation is to change. This study employed a range of recruitment strategies to involve patients in one-to-one interviews about their experiences of health and social care. The recruiter was of Indian origin. Strategies included community (places of worship, local media, voluntary organisations), clinically based strategies and snowballing. Fifteen participants were recruited altogether, but ultimately all came from neurology clinics and disease-specific charities. The authors conclude that despite community-based strategies generating interest and a willingness to be involved, the rare nature of these conditions resulted in a lack of recruits from these strategies. It is suggested that stigma, especially with regard to genetic conditions may have played a part. Researchers may need to plan and prioritise strategies carefully in order to maximise recruitment and utilise resources efficiently dependent on the nature of the research.