Endometriosis, Self-management
Conditions
Brief summary
The goal of this observational study is to document the lived experiences of self-managing endometriosis in people living with endometriosis who live in Europe. The main question it aims to answer is: \[How\] do support structures across personal, community, healthcare, and institutional levels influence individuals' experiences of empowerment and abandonment in self-managing endometriosis? Participants will describe the everyday actions they take to live with endometriosis, through diary studies, interviews, and focus groups.
Detailed description
The goal of this observational study is to document the lived experiences of self-managing endometriosis in people living with endometriosis who live in Europe. The main question it aims to answer is: \[How\] do support structures across personal, community, healthcare, and institutional levels influence individuals' experiences of empowerment and abandonment in self-managing endometriosis? Participants will describe the everyday actions they take to live with endometriosis, through diary studies, interviews, and focus groups.
Interventions
None listed
Sponsors
Wageningen University and Research
University of Edinburgh
Study design
Observational model
ECOLOGIC_OR_COMMUNITY
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
FEMALE
Age
16 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* living in a European country * 16 years or older * having been diagnosed with endometriosis or very likely to have endometriosis based on a previous assessment, even if not having received a definitive surgical diagnosis * fluent in a language spoken by the research team
Exclusion criteria
* not meeting one of the inclusion criteria
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Lived experiences self-managing endometriosis (Qualitative narratives through interviews and diary studies) | From enrollment until the end of focus group participation, up to four years | People will discuss their lived experiences self-managing endometriosis, discussing what everyday actions they do to feel their best (qualitative narratives, lived experiences collected through interviews and diary studies) |
Countries
Netherlands
Contacts
CONTACTErica I Selznick, MSPH
Outcome results
None listed