Co-developing a digital mindfulness- and acceptance-based intervention for endometriosis management and care: a qualitative feasibility study.

Abstract

Background: MY-ENDO (Mind Your ENDOmetriosis) is a mindfulness- and acceptance-based endometriosis self-management intervention aimed at teaching women with symptomatic endometriosis how to manage and reduce negative physical, psychological, and social consequences of endometriosis. This study aimed at involving women with endometriosis in the co-development process of a digital version of MY-ENDO to investigate their experiences with and attitudes toward the intervention.

Methods: The study was designed as a qualitative feasibility study. The empirical material consisted of 35 interviews with seven women who self-reported a diagnosis with endometriosis, based on a semi-structured interview guide. Each participant completed the first four sessions of the intervention and was interviewed before the first and after each of the four sessions (five times in total) during participation. The study was based on a phenomenological approach and the data were analyzed using Braun and Clarke's thematic analysis strategy.

Results: Analysis indicated that the two parts of the program called 'knowledge of the disease' and 'management of the disease' with eight related subthemes were crucial for participants' outcomes. In addition, a generic theme called 'motivation and alliance' was identified.

Conclusion: The digital self-management intervention MY-ENDO was generally experienced and evaluated as positive. It was considered an advantage that the program was specifically tailored to and targeting endometriosis as well as developed in collaboration with patients. Having a contact person was deemed important with regard to maintenance and motivation suggesting potential consequences for the implementation of this digital solution in clinical practice.