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Parent training education program: a pilot study, involving families of children with Prader-Willi syndrome
Yllka Kodra1, Loreta A Kondili2, Alessia Ferraroni1
1Centro Nazionale Malattie Rare, Istituto Superiore di Sanità, Rome, Italy.
Insights
Parent training programs significantly improve the ability of parents to manage behavioral issues in children with Prader-Willi syndrome (PWS). These interventions offer valuable support for families navigating the complexities of PWS management.
Area of Science:
- Genetics and Rare Diseases
- Pediatric Psychology
- Family Support Interventions
Background:
- Prader-Willi syndrome (PWS) is a rare genetic disorder with complex challenges including hypotonia, hyperphagia, obesity risk, learning difficulties, and behavioral/psychiatric problems.
- Managing PWS presents significant difficulties for both affected children and their families, necessitating specialized support.
- Psychoeducational interventions are crucial for equipping parents with effective strategies to manage PWS.
Purpose of the Study:
- To implement and evaluate a psychoeducational parent training program specifically designed for parents of children with Prader-Willi syndrome.
- To assess the program's impact on parents' knowledge, capabilities, and satisfaction in managing PWS-related issues.
Main Methods:
- A pilot parent training program was developed and delivered by the Italian National Center for Rare Diseases.
- The program's effectiveness was evaluated using 11-item, 7-point Likert scale questionnaires administered immediately post-intervention and at a 6-month follow-up.
- The study involved 43 parents of children diagnosed with PWS.
Main Results:
- Parents identified behavior management, dietary restrictions, autonomy, and relationships as priority areas.
- High satisfaction was reported, with 90% appreciating the methodology and 86% feeling more informed.
- Improvements in perceived capability for managing behavioral problems (47-62%) and supporting child autonomy/relationships (62-63%) were observed, though the latter showed a significant decrease at 6 months (p < 0.05).
- Younger parental age (<44 years) correlated with better understanding of autonomy support and collaboration with teachers.
Conclusions:
- Parent training programs, particularly behaviorally oriented ones, show promise for parents of children with PWS.
- Such interventions are valuable tools for enhancing parents' capacity to manage PWS-related challenges.
- Targeted psychoeducational support can empower families in addressing the complexities of Prader-Willi syndrome.
Introduction:
Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by severe hypotonia during the neonatal period and the first two years of life, the onset of hyperphagia with a risk of obesity during infancy and adulthood, learning difficulties and behavioral or severe psychiatric problems. This complex disease has severe consequences and difficult management issues also for patients' families. Parents of children with PWS need appropriate psychoeducational intervention in order to better manage their children with PWS. The purpose of this study was the implementation and evaluation of a PWS psychoeducational parent training program.
Methods:
The Italian National Center for Rare Diseases implemented a pilot parent training program offered to parents of children with PWS. The intervention's effects was evaluated using questionnaires comprised of 11 items rated on a 7 point Likert scale.
Results:
The intervention was offered to 43 parents. The behavior problems management, dietary restrictions, autonomy and relationships were indicated by parents as the priority topics which needed to be addressed. Evaluations, immediately post-intervention and after 6 months, were reported by parents, fulfilling specific questionnaires. 90% of parents involved in the study, appreciated the methodology, 86% felt more informed about PWS, 47-62% felt more capable to better approach behaviour's problems, 20-25% felt better about the child's health situation and future expectations. Feeling more capable to help the child autonomy and relationships were reported in 62% and 63% of parents respectively, which decreased significantly (p < 0.05) according to the evaluation 6 months after the intervention. Younger age of parents (< 44 years of age) was significantly correlated with better understanding on how to help the child's autonomy (OR: 0.05; CI: 0.04-0.8) and to better collaborate with the child's teachers (OR: 0.02; CI: 0.001-0.9).
Conclusion:
Parent training is a promising intervention for parents of children with behavior's problems. Interventions with a behaviorally oriented program, addressed to parents of PWS affected children, is a useful tool in increasing their ability to manage the problems related to the disease.
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