Psychosocial Burden And Quality Of Life Of Primary Caregivers Of Children With Cerebral Palsy

ABSTRACT BACKGROUND : Caregiving for a child with Cerebral Palsy is time consuming and stressful, often leading to psychosocial burden and lowering the quality of life of the caregiver. AIMS: To assess caregiver burden and Quality of life of primary caregivers of children with Cerebral Palsy (CP) To make a comparison of the Quality of life and burden among caregivers of children with different functional levels. SETTINGS AND DESIGN: A cross sectional study was done on primary caregivers of children with Cerebral Palsy (n=60) on regular follow up in Government Medical College, Thrissur to assess their psychosocial burden and quality of life and its association with child’s level of functioning. METHODS AND MATERIAL: Functional levels were assessed by the GMFCS and MACS scores. The psychosocial burden was assessed using the Zarit Burden Interview and quality of life(QOL) was measured using the WHOQOL-BREF. STATISTICAL ANALYSIS: Data analysis was done using Chi-square test and student t-test. RESULTS: All caregivers were mothers. Two third had moderate to severe psychosocial burden and QOL scores in all domains were low (<50). Mothers of children with poorer GMFCS and MACS scores had more chance of having moderate to severe psychosocial burden (p value-0.001) and had poorer quality of life (QOL) (p value-0.009). Mothers with moderate to severe psychosocial burden had poorer QOL (p value-0.01). CONCLUSIONS: Mothers of CP children have significant burden, and interventions to reduce burden and improve quality of life are imperative to reduce stress; which would affect both the child and the caregiver.