This is a qualitative study in three phases. Phase One is a contextual phase consisting of interviews with key informants including healthcare providers, patients, and support group representatives. Phase Two includes in-depth interviews with heterosexual women and their male partners. Phase Three involves a Stakeholder Workshop which will collaboratively explore the findings and discuss how insights from this work contribute to improved support for couples and also inform theories of chronic illness more generally.Endometriosis is a common, disabling gynaecological condition affecting approximately 2 million women in the UK. Common symptoms are chronic pelvic pain, fatigue, heavy periods, and pain experienced during sexual intercourse. It may also affect fertility. There is no consensus on what causes endometriosis and there is no definitive cure. Despite the chronic and potentially disabling nature of endometriosis, along with its impact across a wide range of life domains, there is relatively little work on what it means to live with this condition.The overall aim of this study is to explore the impact of endometriosis on couples in particular, and to enhance the well being of people living with endometriosis by providing an evidence base for improving couple support. This is a qualitative study in three phases. Phase One is a contextual phase consisting of interviews with key informants including healthcare providers, patients, and support group representatives. Phase Two includes in-depth interviews with heterosexual women and their male partners. Phase Three involves a Stakeholder Workshop which will collaboratively explore the findings and discuss how insights from this work contribute to improved support for couples and also inform theories of chronic illness more generally.
The research study ‘Endometriosis: Improving the well-being of couples’ (the Endopart study) was designed to explore the impact of endometriosis (a chronic, gynecological condition) on couples and to contribute to improving the well-being of people living with endometriosis by providing an evidence base for improving couple support. Twenty two couples, in which the female partner had a diagnosis of endometriosis, were recruited to take part in in-depth, face to face, semi-structured interviews. Female and male partners were interviewed separately (n=44). Participants were recruited via Endometriosis UK and other support/information groups/organisations, clinics and word of mouth. We aimed to recruit a diverse sample of participants of varying age and relationship/illness circumstances, and purposively recruited a sub sample of South Asian participants. 44 audio files, and subsequently interview transcripts, were created.
