Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community‐based training in Ghana

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.

What are the implications of Zika Virus for infant feeding? A synthesis of qualitative evidence concerning Congenital Zika Syndrome (CZS) and comparable conditions

“…In four studies the age range was partially overlapping with the focal ages for this review. In one study the age range of the children was 2 months to 9 years[ 37 ], in others it was 19–129 months[ 41 ], 1 year 5 months—11 years 11 months[ 42 ], and 18 months– 12 years[ 43 ]. In the last family caregiver study the age of the children was not specified[ 38 ].…”

“…Parents report the burden of feeding can be time-consuming and stressful for mothers. Typically, studies reported that the feeding of an infant with feeding difficulties was time consuming[ 38 – 40 , 42 , 43 , 44 ]. Parents reported experiencing frustration that they could not feed in the way they wanted to, such as breast-feeding[ 40 ], and that interventions and advice often did not ‘work’[ 39 , 40 ].…”

“…Researchers in a Ghanaian study reported that long meal times were the norm, with some being further lengthened by other comorbidities[ 42 ]. Specific demands include the length of meal times, the need to modify food and prepare separate meals from those of the rest of the family, the perceived inability of children to feed themselves, the messiness caused during meals, and the pressure of providing sufficient food of good enough quality[ 42 ]. Messiness was a particular concern; it could lead to extra chores and might deter others from helping caregivers with feeding[ 42 ].…”

“…Specific demands include the length of meal times, the need to modify food and prepare separate meals from those of the rest of the family, the perceived inability of children to feed themselves, the messiness caused during meals, and the pressure of providing sufficient food of good enough quality[ 42 ]. Messiness was a particular concern; it could lead to extra chores and might deter others from helping caregivers with feeding[ 42 ]. The Brazilian study confirmed that time taken is an issue; but also the timing of the challenges in relation to other issues with which the woman has to contend[ 38 ].…”

“…The Brazilian study confirmed that time taken is an issue; but also the timing of the challenges in relation to other issues with which the woman has to contend[ 38 ]. Mothers’ comments suggest that feeding was often physically exhausting as well as stressful, both for the mother and child [ 42 , 43 ].…”