Endometriosis Self-Management Strategies

Wageningen University and Research150 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

150

Conditions

Endometriosis Self-management

Eligibility

Sex: FEMALEMin age: 16 Years

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

Lived experiences self-managing endometriosis (Qualitative narratives through interviews and diary studies)

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)

Time frame: From enrollment until the end of focus group participation, up to four years