A qualitative study to conceptualize levels of awareness, acceptance and expectations in parents of children with cerebral palsy in Gujarat, India

Abstract

Background: Caring for a child with a disability presents a multifaceted challenge for managing and coping with the child’s functional limitations and possible long term dependence to the caregiver and family. A wide range of psychosocial problems are experienced by the parents of children with CP. As an important member of the rehabilitation team, Physiotherapists comes in regular and long term contact with family and care givers of the CP child. This increase responsibilities of a physiotherapist from more than just dealing with sensory-motor rehabilitation of a CP child to understand need and expectations and guide/counsel the caregiver, parents or family as and when needed. Studies like this can provide valuable information for designing a family centered care program for children with CP. Objective of present study was to identify the main concepts which represent levels of awareness, acceptance and their expectations in parents of children with cerebral palsy in Gujarat.Methods: Qualitative research design using in-depth semi structured interviews was used for the study. Total 21 parents were selected using purposive sampling and were interviewed till data saturation was achieved. The main descriptive elements regarding their levels of awareness, acceptance and expectations were extracted using content analysis method.Results: Common themes such as disturbed social relationships, health problems, financial problems, worries about future of the child, need for more support services, and lack of adequate number of trained physiotherapists were experienced by the parents.Conclusions: A wide range of experiences were described by the parents of children with CP. Studies like this can provide valuable information for improving depth and quality of rehabilitation services by a physiotherapist through a family centered care program for children with CP.

Experiences Sharing Through the Interviews From Twenty One Parents of Children With Cerebral Palsy in Gujarat Region of India.

“…The eligible parents were selected for in-depth interview between June-2016 to December-2016 using purposive sampling after obtaining informed consent from them. Total 21 parents were interviewed in Gujarati using a semi structured adjustable, interview guide format developed for the study, until the data were saturated [13] . The main domains for the interview were determined by extensive literature review and were inclusive of categories related to socio-demographic, psychological, emotional and social categories.…”

“…As reported in the available literature, the families with children with cerebral palsy have to cope with many difficulties including relations with family members, relatives, neighbors, and others; an adverse effect on marital relationship; various psychological problems, such as sleep disturbances, emotional problems as a result of stress from caring for the child; increased likelihood for numerous physical health problems; negative effect on mother"s employment status, financial pressure on parents, and insufficient support services etc [5,6,7,9,10,11,12,13] . At the same time, the parents of children with disability feel the need for support and assistance to meet the needs of their child in their daily care.…”

“…At the same time, the parents of children with disability feel the need for support and assistance to meet the needs of their child in their daily care. It has been reported that parents who are supported by people around them feel less lonely and are better in their ability to cope with their problems [5,9,12,13] .…”

“…Two different studies, conducted on children with CP and autism, have concluded that the anxiety levels of women receiving good social support were found to be low [24,25] . It has been found that parents who share their responsibilities with others and are supported by the people around them feel less alone and that because of this, they can better cope with the problems that they face [6,7,13] . Many studies however point to emotional or interpersonal negativities between couples in families where there is a child with disability [19,26] .…”

“…Because of the parents" important role in supporting and caring of the afflicted children, the amount of difficulties being faced by them should be studied in extensive and exploratory manner. It has been reported in previous studies on parents of children with cerebral palsy, that parents experience anxiety, depression, guilt and low self-esteem, frustration, low matrimonial and personal satisfaction due to feelings of inadequacy for not being able to have a normal child, and also that they have impaired sexual lives [9,10,11,12,13] . As the studies exploring the effect of such difficulties on the Gujarati population in particular are limited in number.…”