F58 Disclosure perspectives of youth with invisible conditions: a scoping review
Friday (CST| HSC): 10:30-10:55 | Poster presentation
Participation and inclusion | Non-specific to Client Group
Hannah Furness (University of Alberta | Edmonton) hfurness@ualberta.ca, Sandra Hodgetts University of Alberta sandy.hodgetts@ualberta.ca
Introduction: Many youth live with an invisible condition. Understanding youth’s perspectives of sharing their diagnosis with others benefits occupational therapists, to whom youth and parents often turn for support in areas of inclusion, participation, advocacy and mental health. Objectives: To explore the perspectives of youth with invisible conditions related to disclosing their diagnosis to others. Methods: This scoping review systematically searched CINAHL, ERIC, PsycINFO, and Medline databases with search terms related to youth, condition, invisible, and disclosure. Inclusion criteria were: (1) youth perspective, (2) invisible condition, (3) peer-reviewed, original research, and (4) disclosure to others (those outside the nuclear family). Results: Thirteen studies met inclusion criteria. These studies included youth (age 4 to 18 years) who have invisible conditions (e.g. epilepsy, diabetes, irritable bowel syndrome, sickle cell disorder, human immunodeficiency virus, depression, and anxiety). No studies were found that portrayed the perspective of youth with neurodevelopmental conditions (e.g. autism). Preliminary findings suggest that youth living with invisible conditions primarily engage in selective disclosure of their diagnosis; based on context, relationship to person, and purpose. Some youth preferred to conceal their condition because of fear of negative responses, (e.g. rejection, stigma, and bullying), as well as the desire to be “normal”. However, many youth preferred to share their condition to obtain support from family, peers, and teachers. Conclusion: Youth living with invisible conditions disclose their condition to others based on context, relationship, and purpose. This review enriches occupational therapists, and others’, knowledge about disclosure to better support youth with invisible disabilities.