Caregiver Led Strategies to Malnutrition and Care-giving Among Children With Cerebral Palsy
Condition: Weight Gain
MeSH terms: Malnutrition; Weight Gain
Study type: Interventional

Summary: 
      The goal of this factorial trial is to test and compare the effectiveness of two caregiver
      led strategies, i.e., the positive deviance nutrition(PD) strategy and the parent facilitator
      training (PFT) strategies, to malnutrition and care-giving among children and youth with
      cerebral palsy. Participants will be assigned to receive either of the four conditions,
      including,

        -  PFT only,

        -  PD only,

        -  Both the PFT and PD,

        -  None of the PD or PFT (controls) Researchers will compare either groups to see if there
           is an improvement in the nutritional status by weight gain and care giving knowledge and
           practices
    

Detailed description: 
      High malnutrition and related mortality risk is common among children with cerebral palsy
      (CP) in most low- and middle-income countries. This is partly due to limited access to
      mainstream health care services worsened by the scarcity of health professionals with an
      extra skill in special needs care, including the ability to manage feeding difficulties
      common in the CP population. Families of children with CP have thus been left alone to care
      for their child without a clear direction on how to provide the best care including effective
      feeding and nutrition practices. This amplifies the relevance of caregivers in the
      improvement of CP child survival, and justifies the need for affordable and culturally
      acceptable strategies.

      Training of caregivers of children with CP as lay professionals has become a cost-effective
      strategy to address the physical rehabilitation workforce gap in some African countries.
      However, the effectiveness of these strategies is not properly evaluated with regards to
      managing malnutrition in CP. Furthermore, caregiver-initiated strategies like the positive
      deviance nutrition strategy although proven effective in the management of malnutrition among
      typically developed children, its effectiveness in the CP child population is not clear. This
      study seeks to evaluate the effectiveness of caregiver led strategies i.e., the positive
      deviance and parent facilitator training (physical rehabilitation) strategies, to
      malnutrition and care-giving among children and youth with CP in eastern Uganda.

      Study Objective: To determine the difference in the effectiveness of positive deviance and
      parent facilitator training strategies to malnutrition and caregiving among children and
      youth with cerebral palsy in the Iganga Mayuge and Bugweri districts.

      Study setting: The study will be conducted within the districts of Iganga, Mayuge and Bugweri
      in eastern Uganda.

      Study design: This will be a 2x2 factorial quasi-randomised controlled trial assessing the
      effects of the Positive deviance (PD) (Yes/No) and Parent facilitator training (PFT) (Yes/No)
      strategies within four experimental conditions: i) Both PD and PFT, ii) Only PD, iii)Only
      PFT, iv) Neither PD and nor PFT(controls).

      Study population: The study population will include caregivers of malnourished children and
      youth aged 2-24 years old with a confirmed diagnosis of CP.
    

Intervention name(s): positive deviance hearth strategy; Parent facilitator trainings; Control
Intervention type(s): Behavioral; Behavioral; Other
Intervention description(s): The PD-program is run for 3-months with 2 weeks (12 days) of nutrition education and rehabilitation sessions (NERS) conducted in each month. Each day session includes an half hour education session and a one and half hour peer led cooking session. Caretakers learn how to rehabilitate their malnourished children under the supervision and the support of caregivers who have well-nourished children (positive deviants). Children are nutritionally assessed by trained nutrition assistants or clinician on the 1st day of the NERS sessions and after three months.
During the rehabilitation sessions, caregivers learn how to prepare nutrient-rich meals for their children from locally available food identified during the positive deviance-inquiry, and actively practice good feeding and hygiene practices. Caregivers together prepare food menus based on the PD-inquiry good foods or what they can conveniently access but of equal nutritional value.; Primary caregivers of children with CP residing in the study setting are trained as parent facilitators by expert physical rehabilitation therapist . Trained parent facilitators then hold fellow caregiver workshops each lasting approximately two hours long and includes between 6-10 caregivers. To ensure quality and consistency of the workshops, the Parent Facilitators follow a detailed manual adapted from the Carer-2-Carer Programme translated into Lusoga, the local language. No expert therapists is involved in the parent facilitator training workshops. Parent facilitator training workshops involve 7 sessions that expose caregivers to understanding CP and how to improve body functioning: session1: what is CP? session2: CP as a way of life, Session 3: Getting my child's body ready to move, Session 4: Eating and drinking a healthy diet, Session 5: communication, Session 6: Play, and Session 7: Central visual impairment.; This group will receive neither the PD nor the PFT interventions but care as usual
Allocation: Randomized
Intervention model: Factorial Assignment
Intervention model description: This will be a 2x2 factorial quasi-randomised controlled trial assessing the effects of the Positive deviance (PD) (Yes/No) and Parent facilitator training (PFT) (Yes/No) strategies within four experimental conditions: i) Both PD and PFT, ii) Only PD, iii)Only PFT, iv) Neither PD and nor PFT(controls).
Masking: Triple (Participant, Care Provider, Outcomes Assessor)
Primary purpose: Treatment