Navigation auf uzh.ch
Navigation auf uzh.ch
Abstract
A birth of a minor with variations in sex characteristics (VSC) is challenging for parents. New guidelines have been introduced at the beginning of the millennium to support parents. The Chicago Consensus Statement introduced the concept of multidisciplinary teams (MDTs) and psychosocial support to provide comprehensive care for individuals with VSC. This approach emphasized collaboration between healthcare professionals (HCPs), psychosocial support groups, parents, and minors with VSC. The implementation of effective MDTs, collaboration among stakeholders, and the provision of psychosocial support for individuals with VSC remains a significant challenge.
The objective of the present thesis is to provide insight into the implementation of psychosocial care and collaboration among HCPs, psychosocial support providers, minors with VSC and their parents. In the general introduction, I illustrate the issues related to caring for minors with VSC and their parents. The thesis is structured in four parts: a scoping review, a thematic analysis of focus groups centered on collaboration and psychosocial support, the analysis of a survey on providing psychosocial services and peer support, and a second thematic analysis of focus groups but with an emphasis on the transition of care.
In the first part, I provide an overview of literature. The literature overview is based on the PRISMA extension for scoping reviews. The results revealed that MDTs mainly include medical professionals. There is a clear lack of cooperation between medical professionals in multidisciplinary teams.
The second part examines the extent of collaboration between HCPs, psychosocial support providers and peer support groups. The collaboration process was examined by conducting seven mixed-focus groups across Central, Northern, and Western Europe. The research focused on team composition, collaboration, challenges faced, and the involvement of psychosocial support providers. The findings highlighted a predominantly multidisciplinary approach within the MDTs. The study revealed a lack of psychosocial providers and poor collaboration with peer support groups, as well as the limited implementation of shared decision-making.
The third part presents the results of the survey on the delivery of psychosocial care among HCPs and psychosocial support providers. Three hundred and one (301) healthcare professionals and peer support group members participated in the survey. The survey assessed the provision of psychosocial support and its perceived effectiveness. The main findings indicated a significant need for psychosocial support, especially during diagnostic procedures. However, the actual implementation of psycho-social care fell short, with challenges such as parental distress and lack of training hindering the HCPs’ abilities to provide adequate support. The results revealed insufficient collaboration between HCPs and peer support groups.
The fourth part presents the transition of care for adults with VSC. The findings showed the inadequate implementation of transition care. Limited resources and a lack of adult specialists were revealed to be significant hurdles. Insufficient psychosocial support further complicated the transition process.
The concluding part of the thesis outlines possible future research paths and areas of improvement in providing care for minors with VSC and their parents. The suggestions for research and practice improvement include: (1) communicating uncertainty in the shared decision-making processes among MDTs, parents, adults, and children; (2) making peer support groups a part of the collaboration process; (3) factors and barriers in the transition of care using larger samples and addressing ways to enhance care for adults and older individuals with VSC. Addressing these challenges is crucial for providing comprehensive patient-centered care for individuals with VSC.
