Nutrition-related concerns of the primary caregiver regarding children with spastic cerebral palsy: a cross-sectional, quantitative research study

Abstract

Background and objectives: Parents with children suffering from spastic cerebral palsy (CP) face various challenges regarding their child's health, nutritional status, growth, development and quality of life (QOL). The nutrition-related challenges that these children encounter are not well described in the South African setting. These concerns, its management, current feeding practices and parental perspectives were investigated. Methods: This cross-sectional, quantitative research study made use of a self-administered, validated questionnaire to obtain information from participants at three various facilities: the Pretoria Centre for Cerebral Palsy (PCCP), the Baby Therapy Centre (BTC) and New Hope School (NHS) situated in the Gauteng Province in South Africa. Recruitment and data collection took place over a period of three months. Data was captured and the information was statistically analysed and extracted for interpretation. Results: Thirty-four questionnaires were completed by parents and returned. The most common nutrition-related concerns reported were constipation (47.1%), underweight (32.4%) and poor appetite (20.6%). Nutrition-related problems were mostly managed by consulting a healthcare professional (HCP). Most children were seen by a multidisciplinary team (MDT) of therapists, but only 44% consulted a registered dietitian (RD). Information pertaining to the current feeding practices showed that most children required assistance at mealtimes (61.8%). Nutritionally poor food choices such as deep fried food and sugary drinks were reported. Solids (64.7%) and pureed food (23.5%) were mostly tolerated. Most parents (55.9%) spent less than two hours daily on feeding their child. Parents lacked confidence when dealing with nutrition-related problems. Most were, however, content when preparing meals, feeding their child and with how their child was growing, developing and their overall health. Conclusions: Nutrition-related concerns that these parents encountered with their spastic CP child were common concerns. The role of the RD in addressing and managing nutrition-related problems, advising on healthy feeding practices and parental support needs to be emphasized and remains a crucial part of treatment in this group of disabled children