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B. pandit1, S. Suwal2, G. Lippolis3, G. Mareschal4, R. pandit5, J.K. Singh4
1Handicap International, Sustainability Officer, Physical Rehabilitation Activity Program, Kathmandu, Nepal, 2Sub Treasurer at Nepal Physiotherapy Association (NEPTA), Handicap International, Senior Liaison Officer, Physical Rehabilitation Activity Program, Kathmandu, Nepal, 3Handicap International, Rehabilitation Specialist, Technical Unit, Bruxelles, Belgium, 4Handicap International, Physical Rehabilitation Activity Program, Kathmandu, Nepal, 5Pokhara University, Health Care Management, Kathmandu, Nepal
Background: Cerebral Palsy (CP) is one of the major causes of childhood disability. Caring child with CP required more time from caregiver as well as resources. Approximately 2.5- 20 time the cost increase while providing care for a child with CP compare to a child without any health condition. When the child is affected, it affects whole the family and especially caregiver. In order to provide long term care, active involvement of caregiver is required, although that may have effect on quality of life of caregivers. In Nepal, quality of life of caregiver of children with CP is often not taken as the main focus by rehabilitation professional while managing children with CP and there is little knowledge on the effect of rehabilitation services on quality of life of caregivers.
Purpose: To determine the quality of life and factors associated with quality of life among caregivers of children with CP in Nepal.
Methods: This study was comparative cross-sectional study. Comparison was done between caregivers of children with CP in rehabilitation group (children with CP receiving rehabilitation service) and non-rehabilitation group (discontinue rehabilitation service from last one year). Sample was collected through purposive sampling technique. Face to face interview was done with 96 caregivers of children with CP aged 4-12 years by using well-structured questionnaire and data were analyzed through SPSS 16 version.
Results: Median age of caregivers was 34 years (20-70 years) and there was significant difference between age in two groups (p=0.028). 86.5% caregivers were female with significant difference between gender in rehabilitation and non-rehabilitation group (p=.03). Majority of caregivers were mother in both groups (74%). Among the caregivers, 78.1% of caregivers had poor quality of life (score below 60%). There was no significant difference between quality of life in rehabilitation and non-rehabilitation group (p=.42). Factors associated with quality of life in rehabilitation groups was illiteracy (OR=7.33, p=.005), aggressive nature of child (OR=11, p=.050), uncooperative nature of child (OR=9, p=.025), poor knowledge about child condition (OR=15.55, p<.001), and low financial support (OR=5.2, p=.051).Whereas, factor associated with quality of life in non-rehabilitation group was gross motor function classification system level of child (p<.001) and more perceived stress (OR=5.53, p=.048).
Conclusion(s): Based on overall result of quality of life, majority of primary caregivers was mother and had poor quality of life and there was no significant difference between quality of life of caregivers in rehabilitation and non-rehabilitation group. Different predominating factors found to be associated with quality of life of primary caregivers in rehabilitation group and non-rehabilitation. Therefore, quality of life of caregivers must be focused by rehabilitation professionals to achieve adequate functional outcome of children with CP.
Implications: Poor quality of life of caregivers is impacting their ability to provide care and affecting child functional level. Therefore, information about caregivers’ quality of life and its associated factors is important for rehabilitation professional to determine treatment protocol for children with CP focusing on caregiver through caregiver centered approach.
Funding, acknowledgements: The study was unfunded.
Keywords: Quality of life, Caregivers, Cerebral Palsy.
Topic: Disability & rehabilitation
Did this work require ethics approval? Yes
Institution: Nepal Health Research Council (NHRC)
Committee: Ethical Review Board of Nepal Health Research Council (NHRC)
Ethics number: Reg. no. 518/2017
All authors, affiliations and abstracts have been published as submitted.
