The adolescent celiac experience: a holistic perspective on self-care among the “invisible” segment of society

Aktaş E. F., Ünlü Kaynakçı F. Z.

DISABILITY AND REHABILITATION, vol.0, no.0, pp.1-10, 2025 (SCI-Expanded, SSCI, Scopus)

  • Publication Type: Article / Article
  • Volume: 0 Issue: 0
  • Publication Date: 2025
  • Doi Number: 10.1080/09638288.2025.2496352
  • Journal Name: DISABILITY AND REHABILITATION
  • Journal Indexes: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, Academic Search Premier, ASSIA, AgeLine, CINAHL, Educational research abstracts (ERA), EMBASE, Linguistics & Language Behavior Abstracts, MEDLINE, Psycinfo, Public Affairs Index, SportDiscus, Violence & Abuse Abstracts
  • Page Numbers: pp.1-10
  • TED University Affiliated: Yes

Abstract

Abstract

Purpose

Strict adherence to a gluten-free diet, combined with the developmental needs of adolescence, can profoundly impact the lives of adolescents with celiac disease. This study aims to explore the life experiences of such individuals, a population often overlooked in society.

Materials and methods

The study utilized Interpretative Phenomenological Analysis (IPA) in semi-structured interviews with 14 adolescents (11 females and 3 males) aged 14–19 years.

Results

Four experiential themes were identified: (1) The Role of Celiac Disease in Life Dimensions; (2) Strategies for Self-Care Maintenance; (3) The Role of Support Systems in Facilitating Self-Care; and (4) Challenges for Sustaining Self-Care Maintenance.

Conclusion

The current findings indicated that the disease impacts not only physical health but also social and emotional well-being, as well as academic and career aspirations. Social support emerged as a crucial factor in promoting effective self-care, whereas experiences of discrimination presented significant barriers to its maintenance.