Improving care for women and girls who have undergone female genital mutilation/cutting: qualitative systematic reviews

Background In a context of high migration, there are growing numbers of women living in the UK who have experienced female genital mutilation/cutting. Evidence is needed to understand how best to meet their health-care needs and to shape culturally appropriate service delivery. Objectives To undertake two systematic reviews of qualitative evidence to illuminate the experiences, needs, barriers and facilitators around seeking and providing female genital mutilation-/cutting-related health care from the perspectives of (1) women and girls who have experienced female genital mutilation/cutting (review 1) and (2) health professionals (review 2). Review methods The reviews were undertaken separately using a thematic synthesis approach and then combined into an overarching synthesis. Sixteen electronic databases (including grey literature sources) were searched from inception to 31 December 2017 and supplemented by reference list searching. Papers from any Organisation for Economic Co-operation and Development country with any date and in any language were included (Organisation for Economic Co-operation and Development membership was considered a proxy for comparable high-income migrant destination countries). Standardised tools were used for quality appraisal and data extraction. Findings were coded and thematically analysed using NVivo 11 (QSR International, Warrington, UK) software. Confidence in the review findings was evaluated using the Grading of Recommendations Assessment, Development, and Evaluation – Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) approach. All review steps involved two or more reviewers and a team that included community-based and clinical experts. Results Seventy-eight papers (74 distinct studies) met the inclusion criteria for both reviews: 57 papers in review 1 (n = 18 from the UK), 30 papers in review 2 (n = 5 from the UK) and nine papers common to both. Review 1 comprised 17 descriptive themes synthesised into five analytical themes. Women’s health-care experiences related to female genital mutilation/cutting were shaped by silence and stigma, which hindered care-seeking and access to care, especially for non-pregnant women. Across all countries, women reported emotionally distressing and disempowering care experiences. There was limited awareness of specialist service provision. Good care depended on having a trusting relationship with a culturally sensitive and knowledgeable provider. Review 2 comprised 20 descriptive themes synthesised into six analytical themes. Providers from many settings reported feeling uncomfortable talking about female genital mutilation/cutting, lacking sufficient knowledge and struggling with language barriers. This led to missed opportunities for, and suboptimal management of, female genital mutilation-/cutting-related care. More positive experiences/practices were reported in contexts where there was input from specialists and where there were clear processes to address language barriers and to support timely identification, referral and follow-up. Limitations Most studies had an implicit focus on type III female genital mutilation/cutting and on maternity settings, but many studies combined groups or female genital mutilation/cutting types, making it hard to draw conclusions specific to different communities, conditions or contexts. There were no evaluations of service models, there was no research specifically on girls and there was limited evidence on psychological needs. Conclusions The evidence suggests that care and communication around female genital mutilation/cutting can pose significant challenges for women and health-care providers. Appropriate models of service delivery include language support, continuity models, clear care pathways (including for mental health and non-pregnant women), specialist provision and community engagement. Routinisation of female genital mutilation/cutting discussions within different health-care settings may be an important strategy to ensure timely entry into, and appropriate receipt of, female genital mutilation-/cutting-related care. Staff training is an ongoing need. Future work Future research should evaluate the most-effective models of training and of service delivery. Study registration This study is registered as PROSPERO CRD420150300012015 (review 1) and PROSPERO CRD420150300042015 (review 2). Funding The National Institute for Health Research Health Services and Delivery Research programme.