A Qualitative Study of Psychosocial Problems among Parents of Children with Cerebral Palsy Attending Two Tertiary Care Hospitals in Western India

Abstract

Objective. To explore the psychosocial problems faced by the parents of children with cerebral palsy (CP) in rural and urban settings. Design. Qualitative research design using focus group discussions (FGDs) was used for the study. Setting. Two FGDs comprising one at a rural tertiary level care hospital and the other at an urban tertiary level care hospital were conducted. Participants. A total of thirteen parents participated in the two FGDs. Main Outcome Measured. Psychosocial problems experienced by the parents of children suffering from CP were measured. Results. The problems experienced by the mothers were associated with common themes such as disturbed social relationships, health problems, financial problems, moments of happiness, worries about future of the child, need for more support services, and lack of adequate number of trained physiotherapists. All the parents had children with problems since birth and most had approached various health care providers for a cure for their child. Conclusions. A wide range of psychosocial problems are experienced by the parents of children with CP. Studies like this can provide valuable information for designing a family centered care programme for children with CP.

Health beliefs regarding pediatric cerebral palsy among caregivers in Botswana: A qualitative study

“…These challenges are likely to influence mothers' ability to transport their nonambulatory children to clinic, especially in settings without adequate transportation. Comparable to previous studies in India, there was a significant financial burden associated with caring for a child with cerebral palsy (Nimbalkar, Raithatha, Shah & Panchal, 2014). Mothers in our study were also concerned about the time limitations placed on their lives and their lack of ability to work or care for other family members.…”

Quality of life of primary caregivers of children with cerebral palsy: a comparison between mother and grandmother caregivers in Anhui province of China

“…These limitations can result in requirements for long‐term care far exceeding the usual needs of children as they grow up (Raina et al ). These may impact upon both the physical and mental health of the caregivers (Raina et al ; Byrne et al ; Yilmaz et al ; Nimbalkar et al ).…”

“…Rearing a child with impairment often causes detrimental effect on caregivers' mental health (Cheshire et al 2010;Al-Gamal and Long 2013;Basaran et al 2013;Nimbalkar et al 2014). There have been many studies showing that psychological status and mental health of mothers having disabled children with CP are negatively affected and may exhibit depressive symptoms (Manuel et al 2003;Unsal-Delialioglu et al 2009).…”

Treatment and re/habilitation of children with cerebral palsy in India: a scoping review

“…26 In India, environmental factors like social attitudes, sociocultural beliefs, lack of knowledge among parents, limited availability of skilled health care professionals (HCPs) and resources, as well as infrastructural, transport, and financial barriers, have been found to affect treatment and participation among children and adolescents with CP. [28][29][30][31][32][33][34][35][36][37][38][39][40] Health care systems, literacy rates, use of the internet for health information, and the use of technology in rehabilitation differ significantly between resource-rich and resourcelimited countries. [41][42][43][44][45][46] All these factors might affect the generalizability of the literature from developed countries to developing countries.…”