The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth's involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth's perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others' reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted.
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RLW was supported by the Canadian Institutes of Health Research (Grant#: CIHR MOP – 89895) for this study. RLW is supported by a Tier 1 Canadian Research Chair (CRC) in Child and Family Engagement in Health Research and Healthcare (Project #: 950-231845), Canadian Institutes of Health Research.
Woodgate, Roberta Lynn; Tennent, Pauline; Barriage, Sarah C.; and Legras, Nicole, "The Centrality of Disclosure Decisions to the Illness Experience for Youth with Chronic Conditions: A Qualitative Study" (2020). Information Science Faculty Publications. 75.