Abstract
The purpose of the study was to assess the care burden among caregivers of children with cerebral palsy. The presentation of cerebral palsy can be global, mental and physical dysfunction or isolated disturbances in gait, cognition, growth, or sensation. It is frequently frightening for the family to hear the diagnosis of cerebral palsy. It excites powerful emotions in both parents. It reshapes the organization of the family. Unfortunately, in Kerala, special schools and rehabilitation centers exclusively for children with cerebral palsy are very few in numbers. Children with cerebral palsy are in most cases, clubbed along with mentally retarded children. Until now, very few studies were reported on the care burden of care givers of children with cerebral palsy from this southern state of India. The care givers are heavily involved in self-care activities which may add an additional challenges and stress to the care givers. The study was conducted in selected rehabilitation centres in Kerala. The research design used was quasi experimental pre-test post-test control group design. The study sample comprised 100 care givers of cerebral palsy children. Subjects were selected with total enumeration sampling method. The care giver-child social and emotional relationship was assessed by structured observation. The care burden was assessed by care burden assessment tool. It was a self-rating five point scale. The reliability of the tools were developed by interclass correlation coefficient (0.90) and Cronch’s alpha (0.82) respectively. Majority of caregivers had weak bonding, (82%) and (84%) in experimental and comparison group respectively. None of the subjects had strong social and emotional relationship with their children. There is significant association between care burden of caregiver’s of children with cerebral palsy and selected back ground variables of child, birth order (2=11.64*, p=0.020) and ability to walk independently (2=6.93*, p=0.031). Two weeks after the intervention there is significant difference in the care burden level between the experimental and comparison group. (Z score=2.9**, p=0.004). Two weeks after the intervention the mean score is (33.2) and (47.8) in experimental group and comparison group respectively with (Z score=7.62**, p=0.001). Three months after the intervention the mean score becomes (20.3) and (47.4) in experimental group and comparison group respectively with (Z score=8.29**, p=0.001).
Keywords: Cerebral palsy, care burden, care givers, nursing interventions
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