Quality of Life of Unaffected Siblings of Children with Chronic Neurological Disorders

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• 作者：Pratyaksha Rana ; Devendra Mishra
• 关键词：Family ; Outcome ; Disability ; Stress
• 刊名：The Indian Journal of Pediatrics
• 出版年：2015
• 出版时间：June 2015
• 年：2015
• 卷：82
• 期：6
• 页码：545-548
• 全文大小：99 KB
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• 作者单位：Pratyaksha Rana (1)
  Devendra Mishra (1)
  
  1. Department of Pediatrics, Maulana Azad Medical College and associated Lok Nayak Hospital, Delhi, 110002, India
  
• 刊物主题：Pediatrics; Gynecology;
• 出版者：Springer India
• ISSN：0973-7693

文摘

Objective To study quality of life (QoL) of the siblings of children with chronic neurological disorders. Methods Between 1st August and 30th September, 2013, 50 children aged 12-8 y, whose child sibling was suffering from a chronic neurological disorder, were enrolled (Study group). Fifty age- and sex- matched siblings of apparently non-neurologically affected children were enrolled as controls (Control group). Those with more than one affected child or any affected adult in the family were excluded. QoL was assessed by a validated version of the WHOQOL-BREF in Hindi, and QoL was compared between cases and controls. Results The disorders in the index cases included cerebral palsy, 18 (15 with epilepsy); autism, 15; mental retardation, 12 and epilepsy, 5. The QoL in all domains was significantly poorer in the study group as compared to the controls. 64% study group children had insufficient knowledge about their sibling’s condition. More than 1/4th study subjects faced difficulties in studies, play or work. There was no difference among the groups with regard to number of siblings who had ‘dropped from the school- Conclusions The QoL of unaffected siblings of children with chronic neurological disorders was significantly impaired. Health-workers may consider including older siblings of neurologically affected children during family-counseling sessions, to provide information and suggest coping strategies. This intervention is likely to improve the functioning of the family unit as a whole.