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Psychosocial well-being of siblings of pediatric patients in palliative home care
Article indépendant
Context: Despite the proposed high burden of siblings of children and adolescents with life limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being.
Methods: In this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests.
Results: In total, 44 siblings (28 female; age 7 to 18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n = 25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological wellbeing and self-esteem. Siblings of PPC patients yielded significant higher scores in the sub-domain prosocial behavior compared to normative data as measured by the SDQ.
Conclusions: Siblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.
http://dx.doi.org/10.1016/j.jpainsymman.2023.08.022
Voir la revue «JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 66»
Autres numéros de la revue «JOURNAL OF PAIN AND SYMPTOM MANAGEMENT»
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