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.
Highlights
Cerebral palsy (CP), with a prevalence of 2.83 per 1000 children among the age group of 0 to 19 years, is one of the most common causes of disability in India [1]
All but two of the participants in the focus group discussions (FGDs) were mothers of children with CP, who were bringing their children for treatment at the respective hospitals
One of the participants at the rural hospital was the grandmother of a CP child and one at the urban hospital was the father of a CP child
Summary
Cerebral palsy (CP), with a prevalence of 2.83 per 1000 children among the age group of 0 to 19 years, is one of the most common causes of disability in India [1]. CP suffers from several problems such as spastic paralysis, cognitive impairment, chronic pain, speech and visual impairment, and gastrointestinal and feeding problems [2]. They have several limitations in self-care functions such as feeding, dressing, bathing, and mobility. These limitations can result in requirements for long-term care that far exceed the usual needs of normal children [3]. In western countries, a greater emphasis is laid on family-centered care, wherein the focus of attention is the entire family, rather than just the child, and this has been found to be highly effective [7–
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