Disability and caregiver burden: Unique challenges in a developing country

Article type: Research Article

Authors: Hewawitharana, Bimba D.R.^a | Wijesinghe, Champa J.^b | De Silva, Aruna^c | Phillips, John P.^d | Hewawitharana, Gemunu P.^{e; *}

Affiliations: [a] Pediatric Unit, Teaching Hospital Karapitiya, Galle, Sri Lanka | [b] Department of Community Medicine, Faculty of Medicine, University of Ruhuna, Galle, SriLanka | [c] Department of Pediatrics, Faculty of Medicine, University of Ruhuna, Galle, Sri Lanka | [d] The Mind Research Network and Department of Neurology & Pediatrics, University of New Mexico, Albuquerque, NM, USA | [e] Pediatric Neurology Unit, Teaching Hospital Karapitiya, Galle, Sri Lanka

Correspondence: [*] Corresponding author: Dr. Gemunu P. Hewawitharana, MBBS DCH MD , Consultant Paediatric Neurologist, Teaching Hospital, Karapitiya, Galle, Sri Lanka. Tel.: +942988206; E-mail: [email protected].

Abstract: PURPOSE:This study aimed to identify factors, including degree of disability, that contribute to the caregiver burden of raising children with cerebral palsy in Sri Lanka. METHODS:Participants were caregivers of children with cerebral palsy attending the pediatric neurology clinic of the only tertiary care center in southern Sri Lanka. The locally validated Caregiver Difficulties Scale (CDS) was administered, and demographic information was obtained in a structured interview. Disability data was accessed through the medical record. RESULTS:Of 163 caregivers who participated in this study, 133 (81.2%) demonstrated a moderate to high level of burden, and 91 (55.8%) were at high risk for psychological burden. In the bivariate analysis, caregiver burden significantly correlated with degree of physical disability based on the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS), the presence of medical co-morbidities, and having two or more children. However, only the GMFCS level and number of children remained significant predictors of caregiver burden after controlling for confounding effects. CONCLUSION:Raising a child with cerebral palsy in Sri Lanka is likely to cause caregiver burden, particularly if they have a high level of disability or one or more siblings. Monitoring caregiver burden as part of routine cerebral palsy management is important, which allows targeting psychosocial support to families most in need.

Keywords: Caregiver burden, cerebral palsy, level of disability, GMFCS, MACS

DOI: 10.3233/PRM-220070

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 16, no. 3, pp. 483-491, 2023