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Over 80 per cent of children with cerebral palsy in South Africa and Lesotho are dependent on the public health care system for therapy.
Within this system, children receive (at best) 35 hours of therapy over their entire lifetime.
After being given the diagnosis of cerebral palsy, rural parents are often left bewildered and with nowhere to go for information or support.
“They carry the weight of guilt and blame, whilst enduring unkind and cruel remarks from ignorant family members and neighbours,” says Malamulele Onward’s Founder and Executive Director, Gillian Saloojee.
Malamulele Onward’s Carer-2-Carer Training Program (C2CTP)
The C2CTP is an initiative designed to address the reality that children in rural areas have little access to therapy services.
“It was designed to support parents who feel isolated, who are ignorant about the nature of cerebral palsy, and who feel hopeless about the future,” Gillian says.
“The initial program aim was to provide parents with accurate information about cerebral palsy in a way that they could make sense of, and that came from another parent who was on the same journey.”
“This is important in a cross-cultural setting like South-Africa and Lesotho where language differences hamper communication.”
“We also wanted to provide parents with the basic skills needed to care for their child. But, we wanted to do it in such a way that it was integrated into their daily lives, preparing them for a lifetime of caring,” she says.
“It was important to provide parents with the background knowledge to enable them and their therapists to make the most of their limited time together.”
“So, for example, if the parents understand the basics of caring for a child with cerebral palsy, then the limited time therapists have with the children can be spent on therapy and giving specific advice and suggestions to parents.”
How did it all come together?
“We recognised it was the parents themselves who were the game-changers in their own communities,” Gillian says.
“The high staff turnover in rural hospitals, together with a dependence on newly qualified community service therapists who only stay for a year, means that the quality and availability of the local therapy service is inconsistent.”
“To create meaningful and sustainable change, training parents was the way to go,” she says.
Gillian said that although there were a number of cerebral palsy training packages available worldwide, they assumed a high level of literacy and were typically designed for therapists working with parents, and as such, were therapist led.
Over a 2-year period – and in collaboration with 20 selected parents (15 mothers, 4 grandmothers and 1father, representing 5 language groups) from deep rural areas where Malamulele Onward was already working – they designed and developed a set of training materials specifically for parents.
The materials enable the delivery of 5 x 2 hour workshops covering:
- What is cerebral palsy?
- Cerebral palsy as a way of life
- Eating and drinking
- Cerebral visual impairment.
“During this process of developing the materials and then training the parents, we found that we continually had to simplify concepts and principles, but that it was the parents themselves who helped us find the right words and examples,” says Gillian.
The final result
The C2CTP comprises of:
- a training manual
- visual display materials, and
- a 3-week training course for parent facilitators
- regular site visits to rural communities with the parent facilitators are working
- annual 2-week residential therapy and training programme where parents receive ongoing training and upskilling.
By the end of the initial 3-week training course, parent facilitators are equipped to independently deliver 5 workshops for other parents in their communities.
“To our knowledge the C2CTP is the only training program designed in collaboration with parents and for parents, to teach other parents about cerebral palsy,” says Gillian.
Outcomes so far
- Collectively, 1429 parents and families have been reached by 47 parent facilitators working in 26 rural sites
- Qualitative analysis from 41 participants attending 6 focus groups conducted at 5 rural sites reveal that:
- The workshops helped parents to understand their child’s condition to the degree that not only were they able to explain cerebral palsy to family, neighbours and strangers, they felt comfortable doing so. It helped parents to cope when they were teased or endured unkind remarks
- The greater understanding helped parents to accept their child, to stop blaming them, and to start loving them. This led to the child becoming more involved and included in daily life.
- Parents gained skills and knowledge in caring for their children which enabled them to feel more competent as caregivers
- Parents came to view their child in a different light. They now see their children as having the potential to do things, no matter how severe their disability.
Gillian says it is apparent that the C2CTP is achieving more than anticipated.
“It has gone beyond simply helping the parents to understand cerebral palsy, and thus accept their child, and stop blaming themselves,” she says.
“Parents now feel empowered. Not only are they proud of their children, but they are finding their voices and can stand up and explain cerebral palsy.”
But wait, there’s more
Gillian and her team at Malamulele Onward are currently developing two further workshops to add to the C2CTP; one on play, and one aimed at Level I–III children.
They would like to see the program extend beyond South Africa and Lesotho to other resource constrained settings.
“We also want to create parent-led circles of support in all rural areas,” says Gillian.
“We envisage that this will lead to parent clubs where parents will advocate for their children, especially around education. It could also lead to employment opportunities for mothers.”
Some of the current C2CTP Parent Facilitators have started mapping their own communities using a tablet and simple software technology. For the first time in a rural area, community resources are being identified, as are all children with cerebral palsy in a community, which facilitates actual planning of services.
“We have already started extending the role of Parent Facilitators to include assisting at their local hospital or clinic-based cerebral palsy services, and to seeing children at home.”
“We have found that as children become teenagers, it is impossible for their families to take them to the hospital or clinic for therapy as transport is such a challenge. We are consequently finding more and more older and more severely disabled children lying in pain and great discomfort in their homes” explains Gillian.
“To be effective in reaching children in their communities where distances are large, roads are poor and public transport infrequent, we are piloting a project where we have trained one Parent Facilitator to drive an off-road motorbike.”
Gillian says her dream is to further the Parent Facilitator’s training to the point where they are recognised as Community Disability Workers, are permanently employed and are independently mobile on motorbikes.
“Only then will we know that all children with cerebral palsy in South Africa’s deep rural areas, and their families, have access to information, skills and support,” she says.