At Malamulele Onward, we invest in rural CP services and offer innovative solutions to improve the quality of life of children with CP and their families. Our ultimate goal is for all those children affected by CP living in rural areas to reach their best potential, within a supportive environment. We recognise that this goal can only be achieved if all rural CP services are able to have a positive and sustainable impact on children and their families.
We believe that this outcome can only become a reality when three pre-requisites (pink boxes) are met:
- Parents no longer feel hopeless and isolated, having come to understand and accept their children with CP and having acquired the necessary skills to care for them.
- Rural therapists and midlevel workers have an appreciation for the role of parents in achieving therapeutic outcomes and are able to provide excellent and effective therapy to children with CP.
- The structure of the CP service is holistic, comprehensive, efficient and effective at reaching all children with CP within the local area, being driven by an approach that emphasises CP as a way of life.
We achieve these three pre-conditions through a systems-based approach that influences rural CP services along three integrated pathways (green boxes):
- Resource Mobilisation: We recognise that the parents of children with CP are valuable resources who can be equipped with skills and mobilised as active contributors to their local CP service. We believe that parents of children with CP are an essential component of a CP service and that parents’ needs cannot be met by therapists and midlevel workers alone.
- Capability Development: We enhance the capability of health care workers at all levels of the CP service (therapists, midlevel workers, care workers and parents) in order to ensure they have the necessary skills and experience to have a long-term impact on the children with CP attending their service.
- Process Improvement: We provide innovative strategies and ongoing support to shape the quality and effectiveness of rural CP services. We recognise that quality therapy is not sufficient if it cannot reach all children with CP in the local area. Therefore, the processes within the CP clinic need to become efficient at utilising the available resources.
Our activities (dark purple boxes) work along these pathways towards achieving short and medium-term outcomes (light purple boxes) necessary for the three pre-requisites to be met. The most valuable asset we offer CP services is over a decade of learning “what works best” for treating children with CP in resource-constrained areas.
The starting point for sharing this wealth of knowledge is through developing and running training courses. We offer specific courses for therapists, midlevel workers, care workers and parents, according to the level of expertise they require in practical application. The therapist and midlevel worker courses focus on the treatment of children with CP, as well as ideas on how a CP service can be restructured to deliver a better service. On the other hand, the care workers course is aimed at anyone who is involved in caring for a children with CP and offers practical skills in meeting their day-to-day needs. Our Carer-2-Carer Parent Facilitator Course specifically trains two parents from the same CP service to jointly run a series of workshops on CP for other parents and caregivers. After becoming Parent Facilitators, they then begin running workshops for parents and caregivers in their local area. These workshops provide parents and caregivers with information on CP, taught in their own language and by someone who has lived the same journey.
Those rural CP services that include therapists and parents trained via our programme, then become part of our outreach site network. Each year, our teams of experienced therapists conduct outreach visits to each of these sites, in order to work together with the CP service, support the trained parents and expose the therapists and midlevel workers to new ideas for increasing the effectiveness and reach of their CP service. Our therapists also work with children in their homes in order to better understand the long-term impact of our intervention.
During each outreach visit, a thorough understanding of the existing CP service is obtained, followed by a team-based approach to identifying practical changes which can be implemented to improve the effectiveness and reach of the CP service. During the visit, between 25 and 50 children receive therapy; the local therapists and midlevel workers further develop their skills through working with the Malamulele Onward team; and the parent facilitators are provided with ongoing support.
Once we have visited an outreach site, we invite the two Parent Facilitators and three additional untrained parents from the same rural CP service to attend our two-week Residential Therapy Programme at our therapy and training centre in Johannesburg. Therapists from the CP service are then invited to attend the second week of the programme in order to gain more experience at applying their understanding and skills effectively within a learning environment and to be exposed to a new way of approaching treatment that emphasises CP as a way of life.
The programme serves two main functions: firstly, it creates an opportunity for therapists, midlevel workers and parent facilitators to consolidate and further enrich their skills; secondly, it allows us to equip additional parents with practical skills that they can pass on to others, or use to further support their local CP service. Therapists and midlevel workers who attend the programme develop a deeper understanding of what parents of children with CP experience and foster an appreciation for a parent’s role in achieving therapeutic outcomes. Parents who attend the programme become equipped with a thorough understanding of how CP affects their child, develop a deeper emotional connection with them and build their confidence in caring for their children in a practical and useful way. An additional outcome of the programme is that at least 10 children each month receive two weeks of direct therapeutic intervention.
Across all three pathways there are numerous lessons learned and a growing understanding of “what works best” is developed through the monitoring and formal research that takes place in each of our programmes. The essential activity that strengthens our programmes and our relationship with our outreach sites is the ongoing dissemination of our learning to rural CP services, through our outreach visits and online resources.
According to our Theory of Change, we expect that where a rural CP service is able to develop through all three pathways of influence, it will develop the pre-requisites necessary for a CP service to have a positive and sustainable impact on children with CP, as well as their families. If this outcome is achieved by a rural CP service, children reached by that service should have the opportunity to reach their best potential within a supportive environment.