A qualitative study into the health and social care needs and barriers to service access for Sudanese women living in a socioeconomically disadvantaged area of Sydney, Australia

Introduction: A core goal of the Healthy Homes and Neighbourhoods (HHAN) integrated care program is sector-capacity building, engagement and identification of the needs of the communities served. Enduring civil war in Sudan has led to a refugee diaspora, with Australian resettlement of mostly South Sudanese people peaking in 2004-5. Sudanese people living in Australia experience poorer health outcomes. We endeavour to identify the needs and barriers in accessing and engaging with the health and social care system for ethnically Sudanese women living in a disadvantaged suburb of Sydney. A secondary aim was to provide a structure for community participation in the design of service delivery. Theory/Methods: Participants were recruited via multi-modal direct and indirect community engagement strategies, and were invited to participate in a community consultation specifically for Sudanese women living in the area of interest. The session was conducted in English with Arabic interpretation. Emerging key themes were recorded, summarised and analysed. Key themes will be further explored in individual interviews, with anticipated completion by December 2018.  Results: Fifteen women participated in the community consultation. Preliminary results suggest barriers to health and social care utilisation included accessibility of appropriate housing options, cost of physical therapies and local inaccessibility of culturally appropriate primary care physicians. A key theme identified was the alienation experienced by Sudanese women who have undergone female genital mutilation (FGM) and who are accessing perinatal care and childbirth services. Further exploration revealed reasons for feeling alienated included childbirth interventions that were unexpected or poorly communicated and post-birth complications for which they felt ashamed to seek follow-up care. Other emerging themes identified ways in which the health sector could deliver improved care, including better coordination of acute and community-based services, ensuring services are advertised effectively and in Arabic and improved training of birth attendants in the effects of FGM on pregnancy and birthing. Discussion: Ethnically Sudanese women who have resettled in Australia experience a range of barriers to accessing and engaging in a complex health and social care system. Further alienation occurs when women access the healthcare system specifically for perinatal care and childbirth services. Lessons learned: Access to the local community relied on long-term, consistent relationship building, identification of key leaders and shared planning and goal development. Female Genital Mutilation and its consequent morbidity is a common issue for Sudanese women who have resettled in Australia. Limitations: The views expressed in this focus group represent the individuals who participated and though FGM was a strong theme, the externalisability of these results should be carefully considered. The exploration of sensitive issues was limited by the consult methodology and varying levels of English comprehension.  Suggestions for future research: Future research will focus on gaining information on the cultural, moral and social acceptability of FGM and the breadth of experiences of women exposed to FGM generationally and across the lifespan. Research should inform the implementation of the Sudanese community’s self-determined values and needs and the facilitation of supportive partnerships to guide responses from the health and social care sector.