A study on the awareness, beliefs, and service utilization among families of children with cerebral palsy in Jalandhar District of Punjab

Introduction: Cerebral palsy (CP) is emerging as one of the main causes of childhood disability in India. Care provided to children with disability largely depends on the awareness, beliefs, and socioeconomic status of the community. This study examines the influence of awareness, beliefs, concerns, and socioeconomic status of the families having children with cerebral palsy in Jalandhar District as one of the cities of state Punjab, Northern India, on the service utilization pattern. Materials and Methods: The study has been approved by BPSAR, Punjabi university, Patiala. Personal interview of 248 families of the children with cerebral palsy using semi structured questionnaire has been the tool for data collection. Results: The awareness of key legislative acts on disability has been nil, though 16.1% parents know about Right to Education (RTE) act and have some knowledge of disability certificate, travelling concession, and benefits and tax rebates available to parents of children with disability. Close to 70% families believe that the condition of the child is so because of the deeds of parents in their previous life and almost an equal number accuse the mother for present condition of her child. Care of child after the demise of parents and the scattered facilities of rehabilitation were the main concerns. Massage has been the most common service utilized by 57.6% followed by physiotherapy (55.6%) and orthoses (38.70%). Speech therapy and special education has been utilized for just 4% of the children belonging to upper and middle classes only and none of the children of any class has received occupational therapy. Conclusion: The awareness level and pattern of service utilization was significantly (P < 0.05) associated with the socio-economical status of family and awareness of rehab services requirements. The findings of the study reinforce that it is essential that concrete steps should be taken to sensitize the community and medical professionals about the needs and methods of rehabilitation of cerebral palsy