Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurological conditions

Abstract

Little is known about health and social care experiences of patients with rare long-term neurological conditions. Furthermore, black and minority ethnic (BME) service users are often perceived to be under-represented in health services research. BME service users have been described as ‘hard to reach’ in the past. However, evidence suggests that a variety of recruitment methods need to be used in order to increase recruitment. We employed a range of recruitment strategies shown to be effective in recruiting BME patients, to recruit patients to participate in one-to-one interviews to establish experiences of health and social care. Strategies included community and clinically based strategies. In total we recruited 15 participants through these recruitment methods, with all recruits ultimately coming from neurology clinics and disease-specific charities. 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. Consequently we conclude that researchers need to plan and prioritise strategies carefully in order to maximise recruitment and utilise resources efficiently dependent on the nature of the research.