Recruitment to research of a “hard to reach group” – experience of interviewing Roma Slovak women about access to cervical cytology

Problem

Women from BME backgrounds are less likely to attend for regular smears. Furthermore, Human Papilloma Virus (HPV) vaccination has been reported as being negatively associated with low socioeconomic status. Recent immigration from Eastern Europe has brought new difficulties in engaging with women eligible to have smears. Many of these countries have no established screening programmes. The Roma constitute one of the largest minorities in Europe (estimate 5 -10 million). The Roma people have historically been marginalized and discriminated against, subsequently large parts of the population have low educational status and high levels of unemployment and deprivation. Roma life expectancy is 10 years lower than other EU citizens. There are an estimated 200,000 Roma in the UK of which 25,000 are living in the Yorkshire and Humber Region. We aimed to conduct a study to investigate Roma Slovak women in the UK about their access to cervical cytology.

Approach

Due to poor literacy levels recruitment was carried out face to face. Aided by a Roma speaker, women were approached in four practices in Sheffield and invited to participate in the study. The four practices are part of “Deep End” South Yorkshire and Humber and identified as having >1000 registered Roma Slovak patients. Interviews were carried out in the patient’s home at a time of their choosing, facilitated by a trained interpreter. The women were called 24 hours before to confirm the interview date was still convenient. Informed consent was obtained using a translated (English to Slovak as there is no written Roma language) consent form. When illiteracy was an issue the consent procedure was verbally described by the trained interpreter. Interviews were transcribed and then also underwent a secondary review by an independent interpreter to check for any areas of confusion or ambiguity regarding the primary interpreting process.

Findings

The recruitment, interviewing, transcription and interpreting verification process is still ongoing, however despite being a “hard to reach group” and a group that would normally be excluded due to poor English proficiency we have interviewed 5 Roma Slovak women. Currently, the face to face recruitment seems to yield a ratio 1:4 (approaches: interviews). Only one women has withdrawn after the initial agreement.

Consequences

Supported by appropriate cultural congruent language support and approach to recruitment, then previously labelled groups as “hard to reach” or excluded from research can be included and represented in vital primary care research.