Researcher Jodie Hughes would like to hear from anyone with endometriosis
I am Jodie Hughes and I am a PhD student at the University of Roehampton, London.
I am studying disparities in the care of PEOPLE with Endometriosis, and identifying where there may be gaps. I will be comparing Health Related Quality of life scores, and comparing the results between samples groups, the groups will include country and area of residence, gender, age, and race.
This study consists of two main parts:
The first is a questionnaire-based survey with a projected sample of 2000+, sample size would in most cases be approximately 10% of the study population. Surveys will be done online. Completion of the questionnaire will take approximately 15-30 minutes.
The second is a series of qualitative interviews with a sample of 20+. Participants will be interviewed possibly in person but due to the current situation with COVID19, we have plans in place to carry out the interviews online or by phone as necessary. These will take up to 2 hours per person.
Survey patients with surgically confirmed endometriosis will be recruited by way of social media, endometriosis web pages, endometriosis support groups, email, and word of mouth. Existing contacts developed during a previous study provide access to Endometriosis charities and support fora.
The interviewees are a subset of those who respond to the survey. They are given contact information for myself so they can choose to go on to the interview if they wish.
The short form endometriosis health profile (EHP-5) will be used. The EHP-5 contains questions that focus on pain, control and powerlessness, emotional well-being, lack of social support, self-image, work, intercourse, infertility worries, treatment, and the relationships between children and medical professionals. It is the primary instrument for measuring psychological and perceived social factors which can then be seen in the light of region, ethnicity and other demographic variables.
A range of interpretative phenomenological analysis (IPA) questions will be asked in a semi-structured interview format to explore how a sample of patients with endometriosis make sense of both their personal and social lives by determining how much impact and meaning the participant holds with regard to particular events, experiences, and states of mind. Due to the amount of time it takes to analyse each case after an IPA session, this part of the study will be carried out on a small sample size and focus in detail on perceptions and understandings of the sample as opposed to making general claims about a large sample group.
To take part, complete the survey here.