Secrecy inhibits support: A grounded theory of community perspectives of women suffering from obstetric fistula, in Kenya

Aim: this study aimed to gain understanding of the views of community members in relation to obstetric fistula. Design and method: a qualitative, grounded theory approach was adopted. Data were collected using in-depth interviews with 45 community members. The constant comparison method enabled generation of codes and subsequent conceptualisations, from the data. Setting: participants were from communities served by two hospitals in Kenya; Kisii and Kenyatta. Interviews took place either in the home, place of work, or hospital. Findings: the core category (central concept) is 'secrecy hinders support'. This was supported by three themes: `keeping fistula hidden', 'treatment being a lottery' and 'multiple barriers to support.' These themes represent the complexities around exposure of individual fistula sufferers and the impact that lack of information and women's status can have on treatment. Keeping fistula secret reinforces uncertainties around fistula, which in itself fuels myths and ignorance regarding causes and treatments. Lack of openness, at an individual level, prevents support being sought or offered. Conclusions: A multi-layered strategy is required to support women with fistula. At a societal level, the status of women in LMIC countries needs elevation to a level that provides equity in health services. At a national level, laws need to protect vulnerable women from mistreatment as a direct result of fistula. Furthermore, resources should be available to ensure provision of timely management, as part of routine services. At community level, awareness and education is required to actively engage members to support women locally. Peer support before and after fistula repair may be beneficial, but requires further research.