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Child and parent perspectives in IBD management: a literature review and qualitative study
Jennifer C deBruyn1,2, Lara Hart3, Gail MacKean2
1Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Canada.
Insights
Pediatric inflammatory bowel disease (IBD) management requires personalized care. Children and parents have distinct priorities for IBD treatment, emphasizing the need for shared decision-making and improved quality of life.
Area of Science:
- Pediatric Gastroenterology
- Inflammatory Bowel Disease (IBD) Research
- Patient-Centered Care
Background:
- Pediatric inflammatory bowel disease (IBD) treatment and goals are evolving.
- Limited literature captures patient and parent perspectives on pediatric IBD management.
- Understanding these experiences is crucial for effective care.
Purpose of the Study:
- To describe the perspectives and preferences of children with IBD and their parents regarding IBD treatment.
- To explore views on treatment goals and decision-making processes in pediatric IBD management.
- To inform patient-centered approaches in pediatric IBD care.
Main Methods:
- A literature review was conducted, identifying nine relevant studies.
- Qualitative semi-structured telephone interviews were performed with children (11-18 years) and their parents.
- Thematic analysis was used to identify key themes in patient and parent experiences.
Main Results:
- Treatment efficacy, symptom improvement, and risk/side effect profiles were key considerations.
- Parents prioritized fewer long-term risks, while adolescents focused on immediate quality of life.
- Five major themes emerged: impact of IBD, treatment goals, and decision-making in treatment, testing, and shared decision-making.
Conclusions:
- Children and parents view IBD management within the context of their lives.
- Findings underscore the need for personalized, patient-centered care.
- Meaningful shared decision-making is essential for effective pediatric IBD management.
Background:
The therapeutic landscape and treatment goals for pediatric inflammatory bowel disease (IBD) continue to evolve. However, there remains a paucity of literature capturing the experiences and preferences of children with IBD and their parents on IBD management.
Methods:
We conducted a literature review and qualitative study to describe perspectives and preferences of children with IBD and their parents regarding IBD treatment, treatment goals, and decision-making in IBD management. Articles were identified in MEDLINE and key study characteristics and findings were summarized to inform qualitative interviews. Children with IBD (11-18 years of age) and their parents were recruited through purposive sampling from a gastroenterology clinic for semi-structured telephone interviews until code saturation was reached in thematic analysis.
Results:
In the literature review, 207 records were identified with nine studies ultimately included. Important aspects of IBD treatment included treatment efficacy, symptomatic improvements, and associated risks and side effects. Parents of children with IBD were concerned about the risks and preferred treatments with fewer long-term adverse effects; adolescents with IBD focused on immediate quality-of-life and short-term benefits. Ten parents and nine children with IBD (2.7-7.9 years disease duration) participated in interviews. Five major themes emerged: (1) overall impact of IBD and its management; (2) IBD treatment goals; (3) considerations for IBD management decisions on treatment; (4) considerations for IBD management decision on testing; and (5) shared decision-making.
Conclusions:
Our findings highlight how children and parents contextualize the importance of IBD management within their lives, and draw attention to the need for personalized, patient-centered care and meaningful shared decision-making.
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