Challenges and strategies of children and adolescents with inflammatory bowel disease: a qualitative examination
Open accessAbstract
BACKGROUND: The aims of this study were to understand the lived experience and elements of quality of life as depicted by children and adolescents with inflammatory bowel disease (IBD). METHODS: Eighty participants with IBD, ranging in age from 7 to 19 years, were interviewed about the impact of IBD on their daily lives. RESULTS: Findings demonstrated that IBD profoundly affects children and adolescents. These young patients experience concerns and discomfort as a result of IBD symptoms and treatments. They commonly feel, in varying degrees, a sense of vulnerability and diminished control over their lives and future, and perceive themselves as "different" from healthy peers and siblings. Despite these negative impacts, participants also described effective means of coping with IBD, and reported that support from family members and friends contributes to coping. A positive attitude and other strategies were also described as strengths contributing to quality of life. CONCLUSION: Clinical assessments need to consider the experiences and perceptions of children as they manage their IBD. Implications for clinical practice are discussed.
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Treatments performed over the course of IBD can lead to a feeling of loss of control.
“treatments performed over the course of the disease can lead to a feeling of loss of control”
From Body image, self-esteem, and quality of life in children and adolescents with inflammatory bowel disease in a tertiary hospital in South Korea (2021) · cites this paper as [11]
Difficulties in curing IBD and uncertainties about treatment progress can cause anxiety, depression, and fear.
“difficulties in curing the disease and uncertainties about treatment progress can cause anxiety, depression, and fear [1,11].”
From Body image, self-esteem, and quality of life in children and adolescents with inflammatory bowel disease in a tertiary hospital in South Korea (2021) · cites this paper as [11]
Children and adolescents with IBD may have a negative perception of themselves due to their smaller size and paler skin compared to their peers.
“They also may have a negative perception of themselves due to their smaller size and paler skin compared to their peers [11].”
From Body image, self-esteem, and quality of life in children and adolescents with inflammatory bowel disease in a tertiary hospital in South Korea (2021) · cites this paper as [11]
People with IBD often perceive feeling unclean due to symptoms such as diarrhea.
“people with the condition often perceive feeling unclean due to symptoms such as diarrhea [11].”
From Body image, self-esteem, and quality of life in children and adolescents with inflammatory bowel disease in a tertiary hospital in South Korea (2021) · cites this paper as [11]
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References 21 · Cited by 140
Research works printed but not linked: 1
- Nicholas DB Koller D Picone G Fostering childhood participation in health care: Grandparents' perspectives on children's involvement in the treatment of pediatric end stage renal disease. Journal of Nephrology Social Work 2004 23 11 12
- Authors
- Nicholas, D. B., Otley, A., Smith, C., Avolio, J., Munk, M., & Griffiths, A. M.
- Affiliations
- Hospital for Sick Children (CA)
- Izaak Walton Killam Health Centre (CA)
- Corresponding author
- Nicholas, David B
- Venue
- Health and Quality of Life Outcomes
- Published
- 2007-05-25
- Volume
- 5
- Issue
- 1
- Pages
- 28-28
- ISSN
- 1477-7525 (ISSN-L)
- PMC
- PMC1892542
- OpenAlex
- W2161626600
- Cited by
- 140
- References
- 21
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 7 · 2023: 8 · 2022: 3 · 2021: 12 · 2020: 10 · 2019: 9 · 2018: 9 · 2017: 7 · 2016: 5 · 2015: 9 · 2014: 10 · 2013: 8 · 2012: 9
- FWCI
- 2.87
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Health and Quality of Life Outcomes (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- inflammatory bowel disease, children, adolescents, lived experience, quality of life, coping strategies, family support, social stigma, vulnerability
- MeSH terms
- Activities of Daily Living, Adaptation, Psychological, Adolescent, Adolescent Behavior, Adult, Child, Child Behavior, Family Relations, Fatigue, Female, Humans, Male, Pain, Quality of Life, Self Concept, Social Support, Inflammatory Bowel Diseases, Qualitative Research
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