GenderJourney: Participatory development of an ethics support tool to foster dialogue and reflection on shared decision-making in gender-affirming medical care

Karl Gerritse; Casper Martens; Marijke A Bremmer; Baudewijntje P C Kreukels; Annelou L C de Vries; Bert C Molewijk

doi:10.1016/j.pec.2023.107854

GenderJourney: Participatory development of an ethics support tool to foster dialogue and reflection on shared decision-making in gender-affirming medical care

Patient Educ Couns. 2023 Sep:114:107854. doi: 10.1016/j.pec.2023.107854. Epub 2023 Jun 17.

Authors

Karl Gerritse¹, Casper Martens², Marijke A Bremmer³, Baudewijntje P C Kreukels⁴, Annelou L C de Vries⁵, Bert C Molewijk⁶

Affiliations

¹ Ethics, Law, and Humanities, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands; Center of Expertise on Gender Dysphoria, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands; Psychiatry, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands. Electronic address: k.gerritse@amsterdamumc.nl.
² Ethics, Law, and Humanities, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands. Electronic address: casper.martens@transvisie.nl.
³ Center of Expertise on Gender Dysphoria, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands; Psychiatry, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands. Electronic address: ma.bremmer@amsterdamumc.nl.
⁴ Center of Expertise on Gender Dysphoria, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands; Medical Psychology, Amsterdam UMC location VUmc, location Vrije Universiteit Amsterdam, the Netherlands. Electronic address: b.kreukels@amsterdamumc.nl.
⁵ Center of Expertise on Gender Dysphoria, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands; Child and Adolescent Psychiatry, Amsterdam UMC location University of Amsterdam, the Netherlands. Electronic address: alc.devries@amsterdamumc.nl.
⁶ Ethics, Law, and Humanities, Amsterdam UMC location Vrije Universiteit Amsterdam, the Netherlands. Electronic address: a.molewijk@amsterdamumc.nl.

PMID: 37356115
DOI: 10.1016/j.pec.2023.107854

Abstract

Objective: To describe and reflect on the development process of GenderJourney: an ethics support tool that seeks to foster (dialogue and reflection on) shared decision-making (SDM) in gender-affirming medical care (GAMC).

Methods: Part of a larger project, this study used a participatory design. We included transgender and gender diverse (TGD) clients and healthcare professionals (HCPs) throughout the study in co-creation workshops. In an iterative process, we (1) established stakeholders' needs, (2) reached a consensus on the aims, content, and design, (3) developed and tested successive renditions, and (4) presented the final version of the tool.

Results: The final tool aims to (A) elucidate the client's care request and corresponding treatment preferences, (B) foster an explicit dialogue between TGD client and HCP about expected/preferred decisional roles and collaboration, (C) stimulate a systematic joint reflection on and handling of SDM-related ethical challenges.

Conclusion: The GenderJourney provides non-directive ethics support to jointly reflect on and foster good SDM, including its inherent ethical challenges. Future studies should focus on its implementation and actual contribution to good SDM.

Practice implications: GenderJourney may be used in GAMC to support the dialogue on what good SDM entails and the identification, discussion, and handling of SDM-related ethical challenges.

Keywords: Clinical ethics support; Communication aid; Ethics support tool; Gender incongruence; Shared decision-making; Transgender; Working alliance.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Attitude of Health Personnel
Decision Making*
Decision Making, Shared*
Gender Identity
Health Personnel
Humans
Patient Participation