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A Child with Crohn's Disease: Problems and Stress Level of Parents-Caregivers-A Cross-Sectional Study
Małgorzata Pasek1, Monika Stoietskyi2, Anna Goździalska2
1Department of Nursing, Faculty of Health, University of Applied Sciences in Tarnów, 8th Mickiewicz St, 33-100 Tarnów, Poland.
Insights
Caring for children with Crohn's disease (CD) causes significant stress for parents, particularly regarding diet, hospitalizations, and medication. Parental acceptance of the child's CD diagnosis is key to reducing caregiver stress.
Area of Science:
- Pediatrics
- Gastroenterology
- Psychology
Background:
- Crohn's disease (CD) is a chronic inflammatory bowel disease impacting children and their families.
- Parental coping mechanisms and stress levels are crucial for managing pediatric CD.
- The challenges of pediatric CD extend beyond medical treatment to daily life management.
Purpose of the Study:
- To investigate the specific problems and stress levels experienced by parents-caregivers of children with Crohn's disease.
- To identify factors influencing parental stress in pediatric CD.
- To assess the adequacy of support systems for families managing pediatric CD.
Main Methods:
- Cross-sectional study utilizing a diagnostic survey method.
- An original questionnaire assessed socio-demographic factors and caregiving challenges.
- The Perceived Stress Scale (PSS-10) measured parental stress levels in 60 caregivers.
Main Results:
- Parents reported significant difficulties with specialized diets, hospitalizations, and chronic medication management for their children with CD.
- A high prevalence of stress (83.34%) and lack of disease acceptance (65%) was observed among caregivers.
- Parental acceptance of the child's CD diagnosis was inversely correlated with stress levels.
Conclusions:
- Parental acceptance of pediatric Crohn's disease is a critical factor in mitigating caregiver stress.
- While informal support from relatives is available, institutional support for families with pediatric CD is often inadequate.
- Addressing parental stress and promoting disease acceptance are vital components of comprehensive pediatric CD care.
Abstract:
Crohn's disease (CD) is a chronic inflammatory bowel disease. The perception of the disease, its troublesome symptoms and the highly involved treatment mean that living with CD requires not only the affected child having to learn to cope with it, but also their parents. The aim of the study was to examine the problems and levels of stress in parents-caregivers of children with CD. The study was cross-sectional and conducted using the diagnostic survey method. An original questionnaire was used to assess the socio-demographic situation and problems of caring for a child with CD, and the standardised PSS-10 questionnaire was added. The study group consisted of 60 parents who accompanied their children during hospitalization. The surveyed caregivers of children with CD found it difficult to maintain a specialised diet and deal with the need for hospitalization and the chronic use of medications. Access to the necessary knowledge about the disease posed the least difficulty in everyday life for a child with CD. The vast majority of parents (50, 83.34%) felt a high level of stress related to caring for a child with CD and, simultaneously, a lack of acceptance of the child's disease (39, 65%). The age of the respondents did not have a statistically significant effect on the occurrence of problems related to everyday functioning. The acceptance of the child's disease by the parents and informal caregivers of children with CD reduced their stress level. Parents could count on support from their relatives but, unfortunately, institutional support was not properly provided.
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