What factors influence Roma women accessing NHS cervical screening?: knowledge , fear and passive consent

Problem

Recent immigration from Eastern Europe poses new challenges in engaging with women eligible to have smears. Many of these countries have no established screening programmes. Furthermore, Human Papilloma Virus (HPV) vaccination is negatively associated with the low socioeconomic status that many migrant women occupy. The Roma constitute one of the largest minorities in Europe (5 -10 million), with an estimated 197,705 living in the UK. Roma people have historically been marginalized and suffered systematic discrimination, including forced sterilisations in some countries. Many of the Roma population have low socioeconomic status, low educational status and literacy and a life expectancy 10 years lower than other EU citizens.A previous audit of smear uptake in four “Deep End” practices identified as having >1000 registered Roma Slovak patients, demonstrated smear uptakes between 53-40% all of which are below the Sheffield CCG average of 73.5%. So what are the barriers, facilitators and attitudes of Roma women towards accessing the NHS cervical screening.

Approach

Recruitment was carried out face to face, aided by a Roma speaker in 4 general practices in Sheffield. Interviews were carried out in the patient’s home, facilitated by a trained interpreter, with a telephone contact 24 hours prior to confirm the interview time and date. Recorded interviews were transcribed verbatim. An independent interpreter undertook a secondary review of each transcript to check for any areas of ambiguity regarding the primary interpreting process. Data were organised using NVivo software. Thematic analysis was undertaken by the lead researcher DL and a Roma community member DK with independent verification by LW, CM.

Findings

Common reasons given by women who declined to participate, implied that the women felt “I’m not ill” or “Nothing wrong with me”. The key emergent themes to date are: lack of knowledge and confusion regarding any procedures/poor communication from medical staff (swabs vs smear; treatment for sexually transmitted diseases; regular injections after visiting colposcopy); lack of awareness of the cervical screening programme; lack of awareness of symptoms of cervical cancer; lack of awareness of HPV and vaccination.

Consequences

The emergent themes, whilst underpinned by written and verbal communication barriers, also reflected a consultation power imbalance as the Roma women perceived themselves to be passive recipients of healthcare. The consequent challenges of explanation regarding the smear procedure and purpose, consent and communicating results of a smear test within this recent migrant population are worthy of further research. Development and evaluation of a culturally congruent intervention to increase smear uptake in migrant populations should be considered.