Nutrition-related concerns of the primary caregiver regarding children with spastic cerebral palsy

Abstract

Background Cerebral palsy (CP) is found to be the most common cause of physical disability in childhood affecting multiple facets pertaining to health of which nutrition plays a major part in their quality of life (QOL) and ability to grow, develop and thrive. Parents with children suffering from spastic CP face various challenges. The nutrition-related problems that these children encounter are not well described in the South African setting. Therefore, the aim of this study was to identify nutrition-related concerns that parents encountered with their children affected by spastic CP, between the ages of one and ten years old, and explore the management of these difficulties together with the current feeding practices and parental perspectives on challenges pertaining to nutrition and health. Methods This cross-sectional quantitative research study made use of a self-administered, validated nutritional questionnaire to obtain information from participants at three facilities: the Pretoria Centre for Cerebral Palsy (PCCP), the Baby Therapy Centre (BTC) and New Hope School (NHS), situated in the Gauteng Province. Primary caregivers (parents or legal guardians) of children suffering from spastic CP were approached for inclusion in this study. Recruitment was done by healthcare professionals (HCPs) at each facility with the use of a screening tool. The recruitment process, data collection and capturing took place over a period of three months simultaneously at these facilities. The information was statistically analysed and extracted for interpretation. Results and discussion Thirty-four questionnaires were completed in total by parents and returned to the facilities. The most common nutrition-related concerns reported were constipation (47.1%), underweight (32.4%) and poor appetite (20.6%). The prevalence of food allergies or intolerances was reported to be low and only a small percentage of children reported to have iron-deficiency anaemia (11.7%). Nutrition-related problems were managed mostly by consulting any HCP (44.1%), obtaining advice from a book or magazine (41.2%), from a friend or relative (35.3%) and the Internet or social media (32.4%). Most children were seen by a multidisciplinary team (MDT) of therapists, but only 44% consulted a registered dietitian (RD). Information pertaining to past and current feeding practices showed that most children were breastfed from birth (52.9%) to the age of less than six months old (55.6%). Some nutritionally poor food choices such as consuming deep fried food was reported, although most children consumed fresh foods from all food groups: starches (76.5%) including fresh fruit (44.1%) and vegetables (41.2%), protein (55.9%) including dairy products (61.8%) and fats (41.2%). Sugar-free drinks were always consumed by only 65% of children. Most children required assistance at mealtimes (61.8%) and most parents spent less than two hours daily on feeding their child (55.9%). Solids (64.7%) and pureed food (23.5%) were best tolerated. Most parents felt content with or very confident in their abilities in all the categories pertaining to feeding practices. Only some parents were anxious about the growth and development (20.6%) of their child. A mere 38.2% of parents were satisfied with how they dealt with nutrition-related problems and only a few parents were very confident in dealing with these problems (14.7%). Parents were satisfied, content or very confident regarding their child’s overall health status. Conclusion and recommendations Nutrition-related concerns that these parents encountered with their children suffering from spastic CP, were common. The information parents use from various sources in managing these concerns also raises concern as to whether it is accurate, factual and science-based. The pivotal role of the RD in addressing and managing nutrition-related problems, advising on healthy feeding practices and parental support pertaining to nutrition, needs to be emphasised and remains a crucial part of treatment in this group of disabled children. The information gathered from this study can be used to evaluate where the need for nutrition education lies and where nutrition-related resources or guidelines for families taking care of a child with CP, can improve or be developed.