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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

Overview
Journal BMJ Open
Specialty General Medicine
Date 2021 May 19
PMID 34006038
Citations 3
Authors
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Abstract

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.

Citing Articles

"This can certainly work…": stakeholder perspectives of the feasibility of a caregiver-led training program for caregivers of children with cerebral palsy in a rural setting in Malawi.

Bakuwa T, Saloojee G, Slemming W Front Public Health. 2024; 12:1390645.

PMID: 39026596 PMC: 11256784. DOI: 10.3389/fpubh.2024.1390645.


Functioning and activity outcomes of the Akwenda Intervention Program for children and young adults with cerebral palsy in Uganda: A cluster-randomized trial.

Asige E, Saloojee G, Andrews C, Namaganda L, Kakooza-Mwesige A, Damiano D Dev Med Child Neurol. 2024; 67(1):87-98.

PMID: 38922854 PMC: 11625466. DOI: 10.1111/dmcn.16007.


Physiotherapy management of children with cerebral palsy in low- and middle-income countries: a scoping review protocol.

Duma N, Hlongwa M, Benjamin-Damons N, Hlongwana K Syst Rev. 2023; 12(1):110.

PMID: 37393357 PMC: 10315018. DOI: 10.1186/s13643-023-02280-8.

References
1.
Gona J, Mungala-Odera V, Newton C, Hartley S . Caring for children with disabilities in Kilifi, Kenya: what is the carer's experience?. Child Care Health Dev. 2010; 37(2):175-83. PMC: 3072473. DOI: 10.1111/j.1365-2214.2010.01124.x. View

2.
Varni J, Seid M, Kurtin P . PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001; 39(8):800-12. DOI: 10.1097/00005650-200108000-00006. View

3.
Mitter N, Ali A, Scior K . Stigma experienced by families of individuals with intellectual disabilities and autism: A systematic review. Res Dev Disabil. 2019; 89:10-21. DOI: 10.1016/j.ridd.2019.03.001. View

4.
Bower E, McLellan D, Arney J, Campbell M . A randomised controlled trial of different intensities of physiotherapy and different goal-setting procedures in 44 children with cerebral palsy. Dev Med Child Neurol. 1996; 38(3):226-37. DOI: 10.1111/j.1469-8749.1996.tb15084.x. View

5.
Andrews C, Kakooza-Mwesige A, Almeida R, Swartling Peterson S, Wabwire-Mangen F, Eliasson A . Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda: a population-based study. Dev Med Child Neurol. 2019; 62(4):454-462. DOI: 10.1111/dmcn.14401. View