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Challenges in Transition of Care for People with Variations in Sex Characteristics in the European Context


Gramc, Martin (2024). Challenges in Transition of Care for People with Variations in Sex Characteristics in the European Context. Healthcare, 12(3):354.

Abstract

Objective: People with variations in sex characteristics (VSCs) have been receiving inadequate care for many decades. The Chicago consensus statement in 2006 aimed to introduce improved comprehensive care, which would include the transition of care from pediatric to adult services organized by multidisciplinary teams. Yet, the evidence for transitional care is scarce. The aim of this paper is to outline the delivery of transition of care for adolescents and young adults with VSCs.

Method: Seven focus groups were conducted with health care professionals and peer support groups by care teams in Central, Northern, and Western Europe. The data from the focus groups were examined using reflexive thematic analysis.

Results: Even though the transition of care has been implemented in the last two decades, it remains inadequate. There are differences among countries, as the quality of care depends on available resources and variations in sex characteristics. Moreover, there are significant hurdles to adequate transition of care, as there is lack of time and funding. The lack of adult care providers and psychosocial support often leaves young adults with VSCs to navigate the health care system alone.

Conclusion: The outcome of the study shows that the transition of care is organized through the department of pediatric endocrinology. The quality of care varies due to resources and variations in sex characteristics. A lack of adult specialists, and especially psychosocial support, represents the biggest obstacle for young adults and adults in navigating the health care system and for improvements in the provision of health care to adults. There is a risk of re-traumatization, as adolescents and young adults must often repeat their medical history and educate adult care providers who are insufficiently trained and knowledgeable.

Abstract

Objective: People with variations in sex characteristics (VSCs) have been receiving inadequate care for many decades. The Chicago consensus statement in 2006 aimed to introduce improved comprehensive care, which would include the transition of care from pediatric to adult services organized by multidisciplinary teams. Yet, the evidence for transitional care is scarce. The aim of this paper is to outline the delivery of transition of care for adolescents and young adults with VSCs.

Method: Seven focus groups were conducted with health care professionals and peer support groups by care teams in Central, Northern, and Western Europe. The data from the focus groups were examined using reflexive thematic analysis.

Results: Even though the transition of care has been implemented in the last two decades, it remains inadequate. There are differences among countries, as the quality of care depends on available resources and variations in sex characteristics. Moreover, there are significant hurdles to adequate transition of care, as there is lack of time and funding. The lack of adult care providers and psychosocial support often leaves young adults with VSCs to navigate the health care system alone.

Conclusion: The outcome of the study shows that the transition of care is organized through the department of pediatric endocrinology. The quality of care varies due to resources and variations in sex characteristics. A lack of adult specialists, and especially psychosocial support, represents the biggest obstacle for young adults and adults in navigating the health care system and for improvements in the provision of health care to adults. There is a risk of re-traumatization, as adolescents and young adults must often repeat their medical history and educate adult care providers who are insufficiently trained and knowledgeable.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Uncontrolled Keywords:Health Information Management, Health Informatics, Health Policy, Leadership and Management
Language:English
Date:30 January 2024
Deposited On:31 Jan 2024 13:16
Last Modified:31 Mar 2024 01:39
Publisher:MDPI Publishing
ISSN:2227-9032
OA Status:Gold
Free access at:Publisher DOI. An embargo period may apply.
Publisher DOI:https://doi.org/10.3390/healthcare12030354
Project Information:
  • : FunderH2020
  • : Grant ID859869
  • : Project TitleINIA - Intersex- New Interdisciplinary Approaches
  • Content: Published Version
  • Language: English
  • Licence: Creative Commons: Attribution 4.0 International (CC BY 4.0)