Akwenda intervention programme for children and youth with cerebral palsy in a low-resource setting in sub-Saharan Africa: protocol for a quasi-randomised controlled study
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Gillian Saloojee1, Francis Ekwan2, Carin Andrews3
1Independent Researcher, Johannesburg, South Africa.
Insights
This study evaluates the Akwenda Cerebral Palsy (CP) program in Uganda, offering a multidimensional intervention to improve motor function and participation for children with CP and support for their caregivers. The program aims to enhance quality of life and community attitudes towards CP in low-resource settings.
Area of Science:
- Global Health
- Rehabilitation Medicine
- Pediatric Neurology
Background:
- Cerebral palsy (CP) is a common childhood motor disorder disproportionately affecting low- and middle-income countries.
- Limited access to rehabilitation services exacerbates the burden on families and health systems in these regions.
- The Akwenda CP programme is a novel, multidimensional intervention designed for low-resource settings.
Purpose of the Study:
- To evaluate the effectiveness of the Akwenda CP programme.
- To improve participation, motor function, and daily activities for children with CP.
- To enhance caregiver quality of life, reduce stress, and increase knowledge, while also improving community attitudes towards CP.
Main Methods:
- A quasi-randomised controlled clinical study involving children and youth with CP aged 2-23 years in rural Uganda.
- Intervention group receives an 11-month multidimensional program including caregiver workshops, therapist sessions, assistive devices, goal-directed training, and community advocacy.
- Control group receives usual care; outcomes assessed pre- and post-intervention at child, caregiver, and community levels.
Main Results:
- This section is for pre-results; specific findings are pending.
- The study is registered and adheres to ethical standards, with data collection ongoing.
- Analysis will compare intervention and control groups using standard randomized controlled trial methods.
Conclusions:
- The Akwenda CP programme offers a promising, comprehensive approach to addressing the needs of children with CP in resource-limited environments.
- Findings are expected to inform the development and implementation of scalable CP interventions globally.
- Successful outcomes could significantly improve the lives of children with CP and their families in underserved areas.
Introduction:
Cerebral palsy (CP) is the most common childhood-onset motor disorder accompanied by associated impairments, placing a heavy burden on families and health systems. Most children with CP live in low/middle-income countries with little access to rehabilitation services. This study will evaluate the Akwenda CP programme, a multidimensional intervention designed for low-resource settings and aiming at improving: (1) participation, motor function and daily activities for children with CP; (2) quality of life, stress and knowledge for caregivers; and (3) knowledge and attitudes towards children with CP in the communities.
Methods:
This quasi-randomised controlled clinical study will recruit children and youth with CP aged 2-23 years in a rural area of Uganda. Children will be allocated to one of two groups with at least 44 children in each group. Groups will be matched for age, sex and motor impairment. The intervention arm will receive a comprehensive, multidimensional programme over a period of 11 months comprising (1) caregiver-led training workshops, (2) therapist-led practical group sessions, (3) provision of technical assistive devices, (4) goal-directed training and (5) community communication and advocacy. The other group will receive usual care. The outcome of the intervention will be assessed before and after the intervention and will be measured at three levels: (1) child, (2) caregiver and (3) community. Standard analysis methods for randomised controlled trial will be used to compare groups. Retention of effects will be examined at 12-month follow-up.
Ethics And Dissemination:
The study has been approved by the Uganda National Council for Science and Technology (SS 5173) and registered in accordance with WHO and ICMJE standards. Written informed consent will be obtained from caregivers. Results will be disseminated among participants and stakeholders through public engagement events, scientific reports and conference presentations.
Trial Registration Number:
Pan African Clinical Trials Registry (PACTR202011738099314) Pre-results.
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