DOI: http://dx.doi.org/10.18203/2349-3291.ijcp20180532

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

Vivek H. Ramanandi, Maitry D. Jayswal, Dhara N. Panchal

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. 


Keywords


Awareness, Acceptance, Cerebral palsy, Expectations, Family centered care, Parents

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References


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