Psychosocial and Economic Burden on Families of Children With Cerebral Palsy: A Correlation With Locomotor Severity.

Abstract

Background:  Cerebral palsy (CP) is a condition that often has significant psychosocial and economic impacts on the caregivers of affected children.

Objective: This study aimed to assess the association between the Gross Motor Function Classification System (GMFCS) level and the psychosocial and economic impact on caregivers of children with CP.

Methodology: A hospital-based cross-sectional observational study was conducted on children with CP aged 2-14 years, admitted to the Inpatient Department (IPD) or attending the District Early Intervention Center (DEIC) for physiotherapy at a teaching hospital in Odisha, from December 2020 to November 2022. In DEIC, appropriate screening and therapy as per requirement is given to the high-risk infants. Early detection of CP is done. Children with CP come here with their parents for physiotherapy, occupational therapy, hearing, vision, and development assessment. Tools used included the GMFCS - Expanded and Revised (GMFCS-ER), a five-level classification system, the Modified Updated Kuppuswamy Socioeconomic Scale (2021) for socioeconomic status (SES), and the Pai and Kapur Family Burden Interview Scale.

Results: A total of 160 children with CP were included in the study, with 98 males and 62 females, resulting in a male-to-female ratio of 1.58:1. Out of 160 children with CP, the socioeconomic distribution showed that 73 (45.6%) belonged to the upper-lower class, 68 (42.5%) to the lower-middle class, 9 (5.6%) to the lower class, and 10 (6.3%) to the upper-middle class. Regarding functional levels of 160 children with CP, 22 (13.8%) of children were in GMFCS class I, 30 (18.8%) in class II, 16 (10%) in class III, 17 (10.6%) in class IV, and 75 (46.7%) in class V. Financially, out of 160 families of children with CP, 75 (46.9%) families were moderately burdened, 84 (52.5%) were severely burdened, and only 1 (0.6%) reported no financial burden. Regarding psychosocial impact, 94 (58.8%) families experienced moderate disruption of family leisure, while 44 (27.5%) experienced severe disruption. Physical health was moderately affected in 73 (45.6%) families, and 14 (8.8%) reported a severe impact. Mental health was moderately affected in 88 (55%)of families, while 33 (20.6%) experienced severe mental health issues. There was a statistically significant association between the GMFCS level of the child and the psychosocial and economic burden on families.

Conclusions: The study concludes that higher GMFCS levels in children with CP are associated with a greater psychosocial and economic burden on their families.