Challenges of care givers of children with cerebral palsy in a developing country

Abstract

Background: The role of caregiving takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. The main challenges for parents of children with disabilities are their ability to cope with their children's chronic health problems and effectively carry on with daily requirements of everyday living. The aim of this study is to evaluate the challenges parents encounter in caring for children with cerebral palsy in a developing country.Methods: Consenting parents of children with cerebral palsy presenting in the neurology clinic of the University of Calabar Teaching Hospital, Calabar, south-south Nigeria were recruited for the study. The bio data of the parents were obtained. The challenges encountered by parents of children with cerebral palsy were determined using a semi structured questionnaire.Results: Seventy parents of children with cerebral palsy were recruited into the study. Majority of the subjects (61.4%) are from the low socio economic while the least represented was the high socioeconomic class. Sixty-four (91.4%) of the parents worry about the handicap and comorbidities of cerebral palsy. Similarly, 91.4% of parents admitted that their social life has been adversely affected by caring for these children. Also, more than half of the parents find it difficult to cope with their jobs or businesses and have their resources depleted. Family disharmony was found in over 40% of the parents. The task of caring for children with cerebral palsy is a daunting one as its negative impact on family, social and family resources are enormous especially in resource poor countries with little or no social support system. Parents caring for children with disabilities therefore need assistance and respite care to alleviate these challenges, since rehabilitation services are limited in most African countries, it has been suggested that community-based and outreach services are provided in order to decrease the burden of care.Conclusions: Effort should therefore be geared toward prevention. The provision of a social support system and rehabilitation centres at subsidized rates will significantly ease the burden encountered by these parents.