Objective

This qualitative exploratory study aimed to deepen the understanding of selective disclosure among adolescents and young adults (AYAs) living with chronic conditions, particularly in the context of intimate relationships. The project created a space for AYAs to reflect on and share their lived experiences of managing chronic illness and disclosing it to potential partners.

Methods

The study used a participatory design that combined elements of Youth Participatory Action Research (YPAR) with citizen science. Four YPAR partners, young people with lived experience of chronic illness, were actively involved in all stages of the research process, including topic selection, recruitment, development of questions, data collection, analysis, and dissemination. Additionally, 44 AYAs participated as respondents to a longitudinal qualitative survey consisting of 35 open-ended questions that focused on intimacy, challenges, coping mechanisms, and support systems. NVivo 14 was used to code and analyze responses thematically.

Results

Of the 44 AYAs contacted, 27 answered all survey questions. The sample had a high representation of young women with diabetes and LGBTQ + individuals with ADHD and other chronic conditions. Levels of self-acceptance, feelings of empowerment, and previous experiences of disclosure shaped participants’ willingness to disclose their health conditions in intimate situations. Supportive social and relational environments, including open-minded partners and trusted peer networks, encouraged disclosure. In contrast, experiences of stigma, fear of rejection, and concerns about being misunderstood or reduced to their diagnosis acted as barriers. Additionally, the presence of visible medication use or physical symptoms contributed to a sense of vulnerability, further complicating the decision to disclose.

Conclusion

The study sheds light on the nuanced relationship between chronic conditions, self-identity, and intimacy among AYAs. It highlights the importance of creating supportive environments and promoting open communication in both clinical and social settings. By integrating YPAR partners throughout the research process, the study highlights the value of participatory methods in capturing diverse youth perspectives and promoting more empathetic approaches to addressing intimacy related challenges in healthcare contexts.

MESH terms

Chronic Disease / psychology*; Qualitative Research; Truth Disclosure*; Young Adult.