Caregiver-led versus therapist-led training programme for caregivers of children with cerebral palsy in rural Malawi: a feasibility randomised controlled trial
4 affiliations
- 1Department of Rehabilitation Sciences, Kamuzu University of Health Sciences, Blantyre, Malawi
- 2Division of Community Paediatrics, Department of Paediatrics and Child Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa
- 3Department of Physiotherapy, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa
- 4Children’s Institute, Department of Paediatrics and Child Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
Abstract
Background: Caregiver-led interventions for children with cerebral palsy are increasingly implemented in resource-limited settings to improve access to services, yet evidence on their feasibility and effectiveness remains limited. This study assessed the feasibility of a group-based knowledge and skills caregiver-led training programme and compared its outcomes to a therapist-led training programme in rural Malawi.
Methods: A two-arm feasibility randomised controlled trial was conducted in rural Mangochi, Malawi between January and August 2023, involving 83 primary caregivers of children with cerebral palsy aged 9 months to 14 years. Participants were randomised 1:1 to caregiver-led or therapist-led arms and received weekly practical knowledge and skills training sessions over seven weeks using the Malamulele Onward Carer-2-Carer Training Programme. Feasibility outcomes included recruitment, randomisation, retention, and fidelity of programme delivery. The primary outcome was caregiver quality of life measured using the Paediatric Quality of Life Family Impact Measure. Child outcomes included activity and participation measured using the Pediatric Evaluation of Disability Inventory and the Child and Adolescent Scale for Participation. Data were analysed using Stata 16.1 (Stata Corporation, College Station, Texas, USA). Outcomes are presented as medians and interquartile ranges due to some skewed distributions.
Results: Thirty-nine of 42 and 37 of 41 caregiver–child pairs in the caregiver-led and therapist-led arms, respectively, completed baseline assessments and commenced the trial. Thirty-seven pairs per arm completed endline assessments and were included in the primary analysis, yielding a 97% completion rate. Programme delivery fidelity was 100% across both arms.
Improvements were observed in both caregiver- and child-level outcomes, with no evidence of differences between groups. For the primary outcome, the median change in Paediatric Quality of Life Family Impact Measure score was 9.7 in both arms (median difference 0; 95% CI: −5.0 to 5.0). For child outcomes, the median change in Pediatric Evaluation of Disability Inventory was 24 (11, 38) in the caregiver-led arm and 27 (6, 35) in the therapist-led arm, with a median difference of − 3 (95% CI: −19.0 to 13.0).
Conclusion: The caregiver-led training programme is feasible and associated with improvements in caregiver and child outcomes, with no evidence of differences compared to therapist-led delivery. These findings support progression to a fully powered non-inferiority trial. If effectiveness and non-inferiority are confirmed, this approach may offer a promising task-sharing strategy for rehabilitation services in similar low-resource settings.
Trial registration: The Pan African Clinical Trials Registry (PACTR202306542386770), retrospectively registered on 05 June 2023(https//pactr.samrc.ac.za/TrialDisplay.aspx? TrialID=25586).
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12887-026-07286-4.
Related
- Feasibility of a multidimensional interdisciplinary rehabilitation program for people with dementia and their informal primary caregivers - a randomized pilot trial with a caregiver focus.
- Feasibility and acceptability of a randomized controlled trial of a patient-centred transition program for stroke survivors and their caregivers—P-NAVISTROKE study
- Evaluating 20-session augmented depression therapy for complex depression (ADepT+) versus usual care: a study protocol for a feasibility randomised controlled trial
- Feasibility and acceptability of a remote blood pressure monitoring pharmacist-led telehealth programme in an emergency department transition care clinic: a pilot randomised controlled trial
- Anakinra versus intramuscular methylprednisolone acetate for gout flares in people with chronic kidney disease (ASGARD): a UK randomised multicentre, double-blind, double-dummy controlled feasibility study with economic, qualitative and safety assessment
BibTeX
@article{bakuwa2026caregiverled,
title = {{Caregiver-led versus therapist-led training programme for caregivers of children with cerebral palsy in rural Malawi: a feasibility randomised controlled trial}},
author = {Takondwa Connis Bakuwa and Gillian Saloojee and Wiedaad Slemming},
journal = {BMC Pediatrics},
year = {2026},
month = jul,
doi = {10.1186/s12887-026-07286-4},
url = {https://doi.org/10.1186/s12887-026-07286-4},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Caregiver-led versus therapist-led training programme for caregivers of children with cerebral palsy in rural Malawi: a feasibility randomised controlled trial
AU - Takondwa Connis Bakuwa
AU - Gillian Saloojee
AU - Wiedaad Slemming
PY - 2026
DA - 2026/07/07
JO - BMC Pediatrics
DO - 10.1186/s12887-026-07286-4
UR - https://doi.org/10.1186/s12887-026-07286-4
AB - Background: Caregiver-led interventions for children with cerebral palsy are increasingly implemented in resource-limited settings to improve access to services, yet evidence on their feasibility and effectiveness remains limited. This study assessed the feasibility of a group-based knowledge and skills caregiver-led training programme and compared its outcomes to a therapist-led training programme in rural Malawi. Methods: A two-arm feasibility randomised controlled trial was conducted in rural Mangochi, Malawi between January and August 2023, involving 83 primary caregivers of children with cerebral palsy aged 9 months to 14 years. Participants were randomised 1:1 to caregiver-led or therapist-led arms and received weekly practical knowledge and skills training sessions over seven weeks using the Malamulele Onward Carer-2-Carer Training Programme. Feasibility outcomes included recruitment, randomisation, retention, and fidelity of programme delivery. The primary outcome was caregiver quality of life measured using the Paediatric Quality of Life Family Impact Measure. Child outcomes included activity and participation measured using the Pediatric Evaluation of Disability Inventory and the Child and Adolescent Scale for Participation. Data were analysed using Stata 16.1 (Stata Corporation, College Station, Texas, USA). Outcomes are presented as medians and interquartile ranges due to some skewed distributions. Results: Thirty-nine of 42 and 37 of 41 caregiver–child pairs in the caregiver-led and therapist-led arms, respectively, completed baseline assessments and commenced the trial. Thirty-seven pairs per arm completed endline assessments and were included in the primary analysis, yielding a 97% completion rate. Programme delivery fidelity was 100% across both arms. Improvements were observed in both caregiver- and child-level outcomes, with no evidence of differences between groups. For the primary outcome, the median change in Paediatric Quality of Life Family Impact Measure score was 9.7 in both arms (median difference 0; 95% CI: −5.0 to 5.0). For child outcomes, the median change in Pediatric Evaluation of Disability Inventory was 24 (11, 38) in the caregiver-led arm and 27 (6, 35) in the therapist-led arm, with a median difference of − 3 (95% CI: −19.0 to 13.0). Conclusion: The caregiver-led training programme is feasible and associated with improvements in caregiver and child outcomes, with no evidence of differences compared to therapist-led delivery. These findings support progression to a fully powered non-inferiority trial. If effectiveness and non-inferiority are confirmed, this approach may offer a promising task-sharing strategy for rehabilitation services in similar low-resource settings. Trial registration: The Pan African Clinical Trials Registry (PACTR202306542386770), retrospectively registered on 05 June 2023(https//pactr.samrc.ac.za/TrialDisplay.aspx? TrialID=25586). Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12887-026-07286-4.
SN - 1471-2431
ER -