Co-developing a digital mindfulness- and acceptance-based intervention for endometriosis management and care: A qualitative feasibility study (Preprint)

Nina Maindal, Kirk, Ulrik Bak, Karina Ejgaard Hansen
2024 · doi:10.2196/preprints.68822 · W4404565989
preprint OA: gold CC0
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This qualitative feasibility study co-developed a digital mindfulness and acceptance-based intervention for endometriosis, finding that disease knowledge, management, and participant motivation were crucial for positive user experiences.

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This qualitative feasibility preprint examined women diagnosed with endometriosis to co-develop a digital mindfulness- and acceptance-based self-management intervention (MY-ENDO) and to assess their experiences and attitudes. Seven participants completed the first four sessions of the intervention and took part in 35 semi-structured interviews before and after each of the first four sessions, with analysis using a phenomenological approach and Braun and Clarke thematic analysis. Participants described two program components—“knowledge of the disease” and “management of the disease”—as crucial to their outcomes, and also identified a broader “motivation and alliance” theme, with the presence of a contact person viewed as important for maintaining motivation and engagement. The authors explicitly note that this is an unreviewed preprint, subject to change and not peer-reviewed, and This paper is centrally about endometriosis — it reports the qualitative feasibility and co-development of a tailored digital MY-ENDO intervention for women with symptomatic endometriosis.

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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 symptoms and physical, psychological, and social consequences of endometriosis. OBJECTIVE 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 diagnosed 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. CONCLUSIONS 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.
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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 symptoms and physical, psychological, and social consequences of endometriosis.

Objective

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 diagnosed 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.

Conclusions

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. Citation Request queued. Please wait while the file is being generated. It may take some time. Copyright © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.

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Condition tags

endometriosis

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (39)

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