Supporting Ultra Poor People with Rehabilitation and Therapy - an open label trial among families of children with Cerebral Palsy in rural Bangladesh (SUPPORT CP Trial)

The study will have three arms; two intervention arms and one control arm. The first intervention arm is an integrated microfinance/livelihood and Community-Based Rehabilitation (IMCBR). IMCBR has been developed based on findings from the literature and pilot data from the Bangladesh CP Register study, and subsequent survey on microfinance activities among BCPR registrants. IMCBR has two components: 1. Microfinance/livelihood program: Duration of intervention: One-off Microfinance/livelihood support with fortnightly follow-up for 12 months Microfinance would be provided to the families of children with CP for purchasing livelihoods (e.g., livestock - chicken, goats). This will assist the families for increasing the income of the family. Participants randomized to IMCBR will be supported to create each microfinance cluster/group (~10 families of children with CP in each group). The groups will be formed voluntarily along geographical boundaries to facilitate participation, retention, and meeting logistics. Each cluster will be visited weekly to discuss livelihood activities (e.g. progress, troubleshooting) (90 minutes), and for community-based rehabilitation (CBR) for children with CP comprising early intervention and primary caregiver's education (90 minutes). The cluster meetings, including CBR activities, will be facilitated by specially trained Community Rehabilitation Officers (CRO). CROs will receive training in microfinance as well as basic physiotherapy and CBR. A group meeting will be organised with members of each cluster to discuss (i) details of the program, (ii) benefit from the program and (iii) motivation for participation. 2. Community-based rehabilitation (CBR): There will be two major elements of the CBR program, which will occur simultaneously during cluster meetings following the microfinance/livelihood portion. a. Goal Directed Training (GDT)- Duration of intervention: Once a week for three hours for 12 months Community-based GDT focused on motor learning will be conducted among the children with CP and their primary caregiver. GDT will be delivered by child’s primary caregiver (participating parent). Sessions will be facilitated by the CROs with the aim that primary caregiver will continue to deliver GDT independently at home. GDT is an activity-based approach to therapy. Meaningful, client-selected goals are used to provide opportunities for problem-solving and to indirectly drive the movements required to successfully meet task demands. A meta-analysis of effective interventions for children with CP has shown that GDT based interventions are highly effective and should be the gold standard treatment for CP. Activities taught: There will be four activities taught in GDT- (1) Goal selection: The community-based rehabilitation session will start with realistic and appropriately time-framed goals set up in collaboration with parents. Goals are basically some specific tasks that are needed for everyday life and which children with CP find challenging. These tasks could be a gross motor function (e.g. sitting), self-care (e.g. eating), communication (e.g. asking for something verbally, using gesture), play or school-based activities. (2) Assessment: A detailed assessment will then be carried out to identify the facilitating factors in achieving the goals. This will involve assessing the physical requirements of the selected task (e.g. balance for sitting) and the requirements of resources and equipment (e.g. activities-specific toys) and the settings (e.g. place of assessment). (3) Intervention: The Community Rehabilitation Officer (CRO) will scaffold the selected motor tasks, so that the child could actively complete at least a part of the task. Parents will be encouraged to use their knowledge of their child’s play preferences to elicit self-generated motor activity. Modified constraint-induced movement therapy(mCIMT) and/or bimanual training will be used when asymmetrical hand function is evident (e.g. Hemiplegia). CROs will also teach parents how to set up a motor-enriched play environment at home to promote child’s self-generated movements, exploration and task success. Parents will be advised to practice until the main goal is achieved. (4) Outcome evaluation: The primary caregiver will be taught how to monitor and evaluate the extent to which a child’s goals are achieved. b. Parents Training Module (PTM) Duration: Three hours weekly for 12 months In the training sessions of GDT Primary caregivers will be taught to provide training to the children CP. participate in PTM to learn basic therapeutically-correct skills for the day-to-day care and support of their child with CP embedded in the principles of GDT. The program will follow the PTM ‘Getting to know cerebral palsy’ and includes 10 modules by which primary caregivers/parents will be trained and made aware regarding the management of children with CP at home including delivering GDT. These modules include: What is Cerebral Palsy, Evaluating Your Child, Positioning and Carrying, Communication, Everyday Activities, Feeding Your Child, Play, Disability in Your Local Community, Running Your Own Parent Support Group and Assistive Devices and Resources. In the second arm, only CBR will be delivered (not the microfinance/livelihood components of IMCBR)