Parental Distress in Pediatric Inflammatory Bowel Diseases: Associations With Time From Diagnosis, Disease Activity, and Demographic Factors

Cesa, Kevin T; Cunningham, Catherine A.; Noll, Robert B.; Kim, Sandra C.

doi:10.1093/crocol/otac019

Cited by 5 publications

(3 citation statements)

References 62 publications

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“…In other words, parents experienced high anxiety when their children experienced active IBD. This result is similar to those of previous studies [ 29 30 ]. It is easy to imagine that parents feel anxious when their children have active IBD because they witness their children experiencing IBD symptoms.…”

Section: Discussionsupporting

confidence: 93%

Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study

Nomura,

Hirano,

Takeuchi

et al. 2023

Pediatr Gastroenterol Hepatol Nutr

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Purpose The parents of adolescents with inflammatory bowel disease may experience impaired mental health and quality of life. This longitudinal study aimed to verify whether the mental health and quality of life of the parents of adolescents with inflammatory bowel disease declined when their children had active disease. Methods Sociodemographic data, parental anxiety, depression, and quality of life were analyzed using validated questionnaires for each variable. After the baseline survey, the second and follow-up surveys were conducted at 3 and 12 months, respectively. The active disease group comprised eight parents whose children had active disease during the baseline and second surveys. The remission group comprised 14 parents whose children remained in remission during both surveys. The improved group comprised nine parents whose children experienced active disease at baseline and remission during the second survey. Parental mental health and quality of life were compared among the groups. Results Significantly higher levels of anxiety were observed in the active disease group in all surveys ( p <0.050). Although depression levels and quality of life did not differ significantly among the three groups, pairing the active disease group with other groups showed some large effect sizes. Conclusion Parents tended to experience decreased mental health and quality of life when their adolescents experienced active inflammatory bowel disease. Consequently, our hypothesis was partially verified. Therefore, parents need support when their children have active disease; this finding highlights the need for parental support systems.

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Section: Discussionsupporting

confidence: 93%

Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study

Nomura,

Hirano,

Takeuchi

et al. 2023

Pediatr Gastroenterol Hepatol Nutr

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“…2 Parents of children with IBD frequently experience heightened levels of anxiety and depression due to their children's illnesses. 3 Moreover, studies have highlighted that parental main concerns include potential side effects of their child's medical treatments. 4,5 Notably, the preferences of patients and their families do not always align with the treatment goals set by physicians.…”

Section: Introductionmentioning

confidence: 99%

“…The mental toll of IBD extends beyond pediatric patients, affecting their parents as well 2 . Parents of children with IBD frequently experience heightened levels of anxiety and depression due to their children's illnesses 3 . Moreover, studies have highlighted that parental main concerns include potential side effects of their child's medical treatments 4,5 …”

Section: Introductionmentioning

confidence: 99%

Parental perspectives on pediatric inflammatory bowel disease: Unraveling concerns, and study participation willingness

Eindor‐Abarbanel,

Pinchevski,

Shalem

et al. 2024

J. pediatr. gastroenterol. nutr.

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ObjectivesThe impact of disease burden extends beyond pediatric inflammatory bowel disease (IBD) patients to include their parents. Previous studies, predating the biologic era, have highlighted parental concerns about potential side effects associated with IBD medications. However, there is a notable gap in the literature regarding parents' perceptions of clinical studies involving pediatric IBD patients. This study aims to explore the specific concerns troubling parents of children with IBD, identifying factors influencing these concerns, and assesses parental willingness to allow their child's participation in clinical studies.MethodsUtilizing social media, we disseminated an anonymous questionnaire to parents of pediatric IBD patients. The questionnaire encompassed queries about parental willingness for their child to partake in clinical studies, aspects of the disease deemed bothersome, and the sense of coherence scale (SOC).ResultsResponses were obtained from 101 parents, with a mean age of 46.4, of whom 82.2% were female. Concerns about potential future side effects of their child's medications surpassed worries about disease symptoms (80.04% vs. 73.47%). Linear regression analysis revealed that parents with lower SOC scores, limited medical care accessibility, and a higher age of the child at diagnosis, exhibited heightened concerns about the future impact of the disease on their child (p = 0.016, 0.003, and 0.045, respectively). While a majority rejected participation in studies involving new medications (54.5%), there was greater agreement for studies on nutritional therapies (84.2%) and complementary medicine (91.1%). Classification tree analysis indicated that women were more inclined to permit their child's participation in studies focusing on complementary medicine (adjusted p = 0.002).ConclusionParents of IBD patients express greater apprehension about potential side effects from IBD medications and display reluctance toward their child participating in clinical studies related to medications.

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Transcultural adaptation and validation of IMPACT-III and IMPACT-III-P in Spanish families: a multicenter study from SEGHNP

Velasco Rodríguez-Belvís,

Palomino,

Pujol-Muncunill

et al. 2024

Eur J Pediatr

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Parental Distress in Pediatric Inflammatory Bowel Diseases: Associations With Time From Diagnosis, Disease Activity, and Demographic Factors

Cited by 5 publications

References 62 publications

Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study

Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study

Parental perspectives on pediatric inflammatory bowel disease: Unraveling concerns, and study participation willingness

Transcultural adaptation and validation of IMPACT-III and IMPACT-III-P in Spanish families: a multicenter study from SEGHNP

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