Feasibility, non-inferiority and effects of a caregiver-led training program for caregivers of children with cerebral palsy
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Date
2022-09-28
Authors
Journal Title
Journal ISSN
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Publisher
Kamuzu University of Health Sciences
Abstract
Type of Study
The proposed study is a convergent parallel mixed methods design that will be conducted in two phases.
Problem
There is critical shortage of rehabilitation professionals in low-resource settings comprehensive training of
caregivers is inadequate. Hence therapeutic inputs for children in these areas remains limited. Despite the
emerging use of caregivers to support training of fellow caregivers of children with CP, the strength of this
model of caregiver training has not been adequately evaluated.
Broad objective
To assess the implementation outcomes of a caregiver-led training program for caregivers of children with
CP in Namwera, Mangochi, Malawi.
Specific objectives
1. To explore the acceptability of the carer-to-carer training program delivered to caregivers of
children with CP from Namwera Mangochi Malawi over a period of 5-days
2. To determine change in knowledge on CP among caregivers of children with CP from Namwera
Mangochi, Malawi following a 5-day training using the Carer-to-Carer training package
3. To describe adaptations made to the carer-to-carer training package following initial delivery over
a 5-day training programme
4. Compare levels of knowledge, skills and quality of life between caregivers trained by a fellow
caregiver and caregivers trained by a therapist using the C2CTP in Mangochi Malawi over a period
of seven weeks
5. Compare levels activity and participation between children with CP whose caregivers were trained
by a fellow caregiver and those whose caregivers were trained by a therapist using the C2CTP in
M6. Explore the perceptions of caregivers of children with CP involved in the C2CTP training program
either as participants or facilitators regarding the perceived effects of the program delivered over
seven weeks in Namwera, Mangochi, Malawi.
Methodology
Phase one, which is the feasibility study, will describe three things, acceptability, adaptation and ability of
training to change caregivers’ level of knowledge on CP. Acceptability will be explored qualitatively using
in-depth interviews and reported as themes, adaptation will be analyzed and reported using the template for
Intervention Description and Replication. Change in knowledge will be assessed using a questionnaire on
Knowledge designed by Malamulele Onward Organisation and reported as means and standard deviation.
Phase two will investigate non-inferiority of the caregiver-led training program through a two-armed
randomised controlled trial where the active control group will be a therapist-led training program. Paired
t-tests will be used to compare changes in caregiver level outcomes such as quality of life (PedsQolFIM),
caregiver knowledge on CP (standard CP knowledge questionnaire). Child level outcomes such as Pediatric
Inventory of Disability (PEDI) and Participation (CASP, PMP) will also be assessed and compared using
paired tests. Non-inferiority of the caregiver-led training program will be tested margin of 4.5 points on the
PedsQolFIM. Parallel to the RCT will be a qualitative study that will explore the experience of all
participants and facilitators of the training program. Inductive analysis will be employed to generate themes
in this regard.
Expected Findings
This study will describe the feasibility of a caregiver-led training program in Malawi. It will also determine
whether the program in not inferior to a therapist-led training program. Therefore, it will provide useful
insight that can inform the design and capacity building required to support caregiver-led training programs
for caregivers of children with CP. In addition to this, the study will provide useful qualitative insight on
the effects and value of a caregiver-led training program for children with CP.
Dissemination
All data generated from both phases of the study will be orally presented to all stakeholders of the program
including Mangochi district hospital, Tiyende Pamodzi group, Malamulele Onward organisation. The
results will also be shared with the larger community of practice through attendance of conferences at local
regional and international levels. A copy of the results will be shared with the College of Medicine Research
Ethics Committee. In addition to that, the results will be sent to a peer review journal for publicationangochi Malawi over a period of seven weeks.
Description
Keywords
Caregiver led training for caregivers of children with cerebral palsy