Abstract

BackgroundCerebral palsy (CP) is the most common childhood disability worldwide, and evidence shows that children with CP are at an increased risk of malnutrition due to feeding difficulties. This qualitative study explores caregiver experiences of feeding before and after a community‐based training program in Ghana.MethodsThirteen caregivers of children with CP, who were severely undernourished, were interviewed at the start of the training program. Eleven of these were interviewed again after a year of monthly group trainings and home visits, which included guidance on feeding. Four additional caregivers were interviewed at end line. Interviews explored caregivers’ mealtime experiences, as well as a 24‐hr dietary recall and a structured feeding observation checklist. Children's nutritional status was assessed by anthropometry.ResultsCaregivers found mealtimes stressful due to time demands, messiness, and the pressure of providing enough quality food. They felt that the training program had helped reduced this stress and dietary recall data suggested some improved dietary quality. However, there was neither improvement nor deterioration in anthropometric status of the children.ConclusionGroup trainings were welcomed by caregivers and notably reduced stress around feeding times. However, future work is needed in order to improve anthropometric outcomes, including, but not limited to, greater focus on nutritional requirements during caregiver training interventions. Therapeutic feeding programs must also be better utilized and need to be better equipped to care for this group of children, including deviating from standard admission and treatment protocols.

Highlights

  • Cerebral palsy (CP) is a group of permanent neurological disorders affecting postural and movement development, attributed to nonprogressive disturbances in the developing fetal or infant brain (Donald, Samia, Kakooza-­Mwesige, & Bearden, 2014)

  • This qualitative study was nested within a larger before/after study seeking to evaluate the impact of the community-­based parent CP training program: Getting to Know Cerebral Palsy” (GTKCP)

  • The CP training program was implemented in eight geographical regions in Ghana

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Summary

Introduction

Cerebral palsy (CP) is a group of permanent neurological disorders affecting postural and movement development, attributed to nonprogressive disturbances in the developing fetal or infant brain (Donald, Samia, Kakooza-­Mwesige, & Bearden, 2014) It is one of the most common childhood disabilities affecting between 1.5 and 4 children per 1000 live births globally (Division of Birth Defects and Developmental Disabilities 2017; Donald et al, 2014). Cerebral palsy (CP) is the most common childhood disability worldwide, and evidence shows that children with CP are at an increased risk of malnutrition due to feeding difficulties. This qualitative study explores caregiver experiences of feeding before and after a community-­based training program in Ghana. Therapeutic feeding programs must be better utilized and need to be better equipped to care for this group of children, including deviating from standard admission and treatment protocols

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