22 research outputs found
Severe and Treatment Resistant Neonatal Hyperkalemia due to pseudohypoaldosteronism type 1
Quality-of-life evaluation of healthy siblings of children with chronic Illness
Background: Chronic disease of children can cause changes in the
health-related quality of life (HrQoL) of the family members.
Aims: To evaluate the HrQoL of healthy siblings of children with chronic
disease.
Study Design: Cross-sectional study.
Methods: The study included healthy sibling of children with chronic
disease (cerebral palsy, epilepsy; diabetes, celiac disease,
hematologic/ oncologic disease, or asthma) and healthy sibling of
healthy children to evaluate the quality of life. We used the Pediatric
Quality of Life Inventory questionnaire; the physical health and
psychosocial health scores were calculated using the responses of the
sibling and parent. The primary endpoint was the comparison of HrQoL
scores of healthy siblings of children with chronic disease and that of
healthy siblings of healthy children.
Results: This study included a respective healthy sibling of 191
children with chronic disease and healthy sibling of 100 healthy
children. The physical health, psychosocial health, and total health
scores of healthy siblings of children with chronic disease were
significantly lower than that of healthy siblings of healthy children
(p<0.001). Among the healthy siblings of children with chronic disease,
the lowest psychosocial health score was found in the siblings of
children with cerebral palsy, hematologic/oncologic disease. and asthma
(p<0.001). The global impact on the quality of life for healthy siblings
of children with chronic disease was significantly higher in the
self-report of the children than that of the parents (30.4\% versus
15.1\%, p<0.05).
Conclusion: Most healthy siblings of children with chronic disease are
physically and psychosocially affected and there is low parental
awareness of this condition. This can increase the risk of emotional
neglect and abuse of these children. Therefore. special support programs
are needed for the families of children with chronic diseases