1 Zsuzsanna Katalin Papp / Semmelweis University, Institute of Mental Health
2 Szabolcs Török/ Semmelweis University, Institute of Mental Health
3 Andrea Békés / Bátor Tábor Foundation
4 Annamária Szentes / Semmelweis University, Institute of Mental Health
5 Dalma Hosszú / Pécs University, Institute of Psychology
6 The European Kidscreen Group
7 Gyöngyi Kökönyei / Eötvös Loránd Science University, Institute of Psychology
Introduction: It is known as the “proxy problem”, that parents rate their children’s health related quality of life (HRQoL) differently, than the children themselves. Literature suggests that the direction and the rate of disagreement in clinical sample may relate with parental stress or the perceived burden of the illness on the family.
Aims: The purpose of our study was to assess the level of parent-child agreement on HRQoL in a sample (n=259) of Hungarian diabetic, juvenile rheumatoid arthritis, and oncology patients (age 10-18), and examine if demographic, illness-specific or cognitive factors influenced the agreement, especially the perception of future consequences of the chronic condition.
Method: Health related quality of life was assessed with child and parent version of Kidscreen-52. To measure the perceived burden of illness we chose the consequences scale of IPQ-R, both parent and child version were used.
Results: Agreement between child and parent on the KIDSCREEN-52 instrument was moderate to good (ICC = 0.41 to 0.66). Parents’ view on their children’s physical health, psychological well-being, parental relations, and social support was found to be worse in comparison with children’s own self-evaluation. The child’s gender, age, the type of disease and the parents’ level of education did not have significant effect on the agreement.
Both children’s and parents’ perception of illness consequences affected the rate and direction of agreement on HRQoL. The parent-child agreement on the consequences had significant effect on the rate and direction of parent-child agreement on the child’s HRQoL on various scales: physical health, psychological wellbeing, financial resources, social support and school environment.
Conclusion: Cognitive factors of the illness perception are worth to consider in clinical treatment and in further research.
Doctoral school: Mental health sciences
Program: Sociological and mental health approaches to resources for individuals and communities
Supervisor: Szabolcs Török