Parental coping and child psychosocial adaptation in pediatric Wilson disease

OBJECTIVES: Pediatric data on psychosocial adaptation in Wilson disease remain limited. In particular, the relationship between parental psychosocial functioning and child quality of life and adaptation is still insufficiently understood. METHODS: This cross-sectional study included 50 children with Wilson disease and one parent of each child. Children completed the Revised Children's Quality of Life Questionnaire (KINDL-R) and the JSR coping questionnaire. Parents completed the General Health Questionnaire-28 (GHQ-28), Brief Coping Orientation to Problems Experienced (Brief COPE), Satisfaction With Life Scale (SWLS), and the Child Behavior Checklist (CBCL). Canonical correlation analysis was used to examine multivariate associations between child and parent variable sets. RESULTS: The full canonical model was statistically significant, and five canonical functions were extracted; however, only the first function reached statistical significance (Rc = 0.802, Wilks' λ = 0.202, p = 0.001). This function linked parental problem-focused, emotion-focused, and avoidance coping, together with general psychological distress, with child dispositional active, social, and emotion-focused coping, total quality of life, and, to a lesser extent, internalizing problems. Redundancy indices supported the practical interpretability of the identified parent-child psychosocial pattern. CONCLUSIONS: Psychosocial adaptation in children with Wilson disease appears to be meaningfully related to parental psychosocial functioning, particularly parental coping patterns and general psychological distress. These findings support a family-oriented approach to psychosocial assessment and care in pediatric Wilson disease.

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Journal
Journal of Pediatric Gastroenterology and Nutrition
Published
2026-10-26
DOI
https://doi.org/10.1002/jpn3.70630
Primary Topic
Family Support in Illness
Type
article
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article

Parental coping and child psychosocial adaptation in pediatric Wilson disease

Wojciech Jańczyk, Piotr Socha, Marcin Piotr Biernacki, Anna Jakubowska-Winecka et al.
Journal of Pediatric Gastroenterology and Nutrition
Family Support in Illness
article

Parental coping and child psychosocial adaptation in pediatric Wilson disease

Wojciech Jańczyk, Piotr Socha, Marcin Piotr Biernacki, Anna Jakubowska-Winecka, Marta Biernacka
article en

Abstract

OBJECTIVES: Pediatric data on psychosocial adaptation in Wilson disease remain limited. In particular, the relationship between parental psychosocial functioning and child quality of life and adaptation is still insufficiently understood. METHODS: This cross-sectional study included 50 children with Wilson disease and one parent of each child. Children completed the Revised Children's Quality of Life Questionnaire (KINDL-R) and the JSR coping questionnaire. Parents completed the General Health Questionnaire-28 (GHQ-28), Brief Coping Orientation to Problems Experienced (Brief COPE), Satisfaction With Life Scale (SWLS), and the Child Behavior Checklist (CBCL). Canonical correlation analysis was used to examine multivariate associations between child and parent variable sets. RESULTS: The full canonical model was statistically significant, and five canonical functions were extracted; however, only the first function reached statistical significance (Rc = 0.802, Wilks' λ = 0.202, p = 0.001). This function linked parental problem-focused, emotion-focused, and avoidance coping, together with general psychological distress, with child dispositional active, social, and emotion-focused coping, total quality of life, and, to a lesser extent, internalizing problems. Redundancy indices supported the practical interpretability of the identified parent-child psychosocial pattern. CONCLUSIONS: Psychosocial adaptation in children with Wilson disease appears to be meaningfully related to parental psychosocial functioning, particularly parental coping patterns and general psychological distress. These findings support a family-oriented approach to psychosocial assessment and care in pediatric Wilson disease.

Journal of Pediatric Gastroenterology and Nutrition
Children's Memorial Health Institute (PL), Wojskowy Instytut Medycyny Lotniczej (PL)
Openalex Percentile: Top 6%
Family Support in Illness
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