Social Wellbeing and Quality of Life of People Living with Disorders of Sex Development and Sex Re-Assignment in Nigeria: A Qualitative Phenomenological Study

Abstract

Disorders of sex development is a complex interaction between biological, psychological, social, and cultural factors, making it necessary for the multidisciplinary team to decide on the individualized patient basis. The characteristics of the individual patient, family and the social background are taken into consideration in order to derive maximum benefit. In developing countries, many people living with disorders of sex development faced serious psychological and social traumas such as marginalization, rejection, isolation, feeling of sadness, feeling of uncertainty, and feeling of shame. Therefore, this study explores the social wellbeing and quality of life of people with disorders of sex development in Nigeria. We used qualitative phenomenological approach to explore the social wellbeing and quality of people with disorders of sex development in Nigeria. We recruited thirteen participants using purposive sampling technique from Usmanu Danfodiyo Teaching Hospital Sokoto, Nigeria. We conducted data collection exercise using face to face interviews, transcribed, and analysed using interpretative phenomenological analysis technique with the aid of NVivo software. Four themes emerged from the data that describe the social wellbeing and quality of life of people with disorders of sex development in Nigeria. These themes are socialization and social isolation, intimate relationships, sexuality, and relationships with people. Participants experienced social isolation, marital problems, poor sexual experience, absence of sexual pleasure and stigmatization. People with disorders of sex development had poor social wellbeing which negatively affects their quality of life. Findings would inform the multidisciplinary team the need to incorporate social wellbeing of people with disorders of sex development in their treatment and the need to explore public perception on people living with disorders of sex development in Nigeria.