Malnutrition a probable predictor of mortality in Cerebral Palsy (CP), and the effect of the positive deviance and parent facilitator training strategies to malnutrition among children and youth with CP in Eastern Uganda

Abstract

Introduction: A CP prevalence study in eastern Uganda implied high mortality among children with CP as they grow older, and malnutrition was allegedly among the contributors. Nonetheless, evidence is scarce and targeted community based nutritional interventions are limited. The studies in this thesis sought to test the predefined hypothesis, and evaluate the effectiveness of the positive deviance (PD), and parent facilitator training (PFT) interventions for malnutrition among children and youth (C&Y) with CP at the Iganga Mayuge Health and Demographic Surveillance Site (IMHDSS) in eastern Uganda. Methods: Four sub-studies were conducted on a previously identified cohort of children with CP aged 2-17 years at recruitment in 2015. In sub-studies I and II, follow-up data from the cerebral palsy in Uganda study (CURIE) collected in 2015 and 2019 at the IMHDSS were used to assess whether malnutrition was one of the predictors of mortality, and to determine the four-year change in nutritional status of children with CP compared to non-CP peers. In sub-study III, a qualitative study design was used to identify the unique nutritional practices of caregivers of well-nourished children with CP (positive deviants), which were evaluated along with the parent facilitator trainings for effectiveness on malnutrition among C&Y with CP at the IMHDSS area using a 2x2 factorial trial design (Sub-study IV). Main findings: The survival probability was significantly lower among children with severe malnutrition (log-rank test, p = 0.037). Growth was significantly slower in the CP group than that in the non-CP group over four years. The severity of motor impairments was negatively correlated with growth in CP (β=-1.37,95%CI =-2.67, 0.038). The caregivers of well-nourished children with CP (positive deviants) showed adaptive and responsive feeding practices, and positive coping mechanisms. C&Y with CP who received the PD intervention exhibited more significant weight gain than those who did not receive PD (adjusted coefficient=0.52, 95%CI 0.16,0.88, p=0.005). Children who received the PFT intervention showed significantly improved weight for age z-scores (adjusted coefficient=0.42, 95%CI -0.14,0.56, p=0.006), but not weight gain. The combination of the PD and PFT strategies improved the weight indices of C&Y with CP compared to providing the PFT intervention alone (adjusted coefficient=0.80, 95%CI (-1.24, -0.36), P<0.01) or not receiving any of the PD or PFT interventions (adjusted coefficient=0.77, 95%CI 0.22, 1.32, p=0.006). Conclusion: This thesis provides evidence of high mortality among children with CP in eastern Uganda due to undernutrition and severe motor impairments. Integration of the PD-nutrition strategy into rehabilitation programs yields better nutritional outcomes and is thus warranted.