Young adults living with chronic illness: disclosure strategies and peers’ understanding

Abstract

Purpose

Many young adults living with chronic illness fear being perceived as different by their peers and excluded from social activities. This forces them to consider whether to disclose or conceal their illness. This article analyses young adults’ disclosure strategies and links them to peers’ understanding of illness.

Materials and methods

The explorative study is based on episodic interviews with sixty young adults living with chronic illnesses (type 1 diabetes, cancer, chronic inflammatory bowel disease or a rare disease) and thirty peers. The interviews were thematically coded. The young adults’ statements were compared to the peer perspectives on a case-by-case basis.

Results

We identified three groups of young adults: 1) those who are generally open with peers about their illness and its subjective meaning; 2) those who share selected health-related information’s with selected peers; 3) those who refrain from active disclosure and are unsure how they might talk about their illness when it becomes apparent. Our findings also indicate that peers differ in the sophistication of their illness perceptions and the meaning they ascribe to living with a chronic illness.

Conclusion

Trainings should target both young adults and peers, and should assist both sides in talking about (serious) chronic illness.

IMPLICATIONS FOR REHABILITATION

- Rehabilitation professionals should find ways to involve peers in caring for chronically ill young adults.

- Rehabilitation professionals should step up their efforts to destigmatize chronic illness.

- Disclosure/non-disclosure of chronic diseases should be given greater consideration in rehabilitation and health care.

- If young adults choose not to disclose their chronic illness, rehabilitation professionals should treat this as neutral and analyse the subjective functionality of such a decision.