This project was a World Cerebral Palsy Day Merit Award winner in 2017. Enter your project or campaign in the 2018 Awards!
Cerebral palsy is the most common cause of physical disability in children worldwide. Unfortunately, in most low-resource settings, as is the case in Ghana, there are few services available to support children with cerebral palsy or their families. The good news is that one project is having a noticeable impact as it set its sights on empowering parents, families and community workers.
Now these children are able to receive a substantially higher quality of care at home than they’ve ever had access to before. And parents are also experiencing far less stress than they ever imagined possible, all because they’re better prepared to care for their child.
Marjolein Meande-Baltussen is the West Africa Regional Advisor for the CBM Inclusive Child Development program.
She is part of a team that have used the London School of Hygiene and Tropical Medicine’s (LSHTM) Getting to Know Cerebral Palsy training manual to make sure parents of children with the condition no longer feel alone.
“Due to the limited availability of rehabilitation services, families are often the main providers of care for children with cerebral palsy,” says Marjolein.
“They usually don’t have any training or support. Our baseline study showed that high stigma, local belief and misconceptions related to children with cerebral palsy left caregivers with an extremely low quality of life, high levels of emotional stress, and physical exhaustion.”
“Many primary caregivers are on their own. Fathers are often absent,” she says.
“We started this project to empower parents, families and community workers to provide relevant home-based interventions.”
“We wanted to improve outcomes for children and families within a rights-based framework that promoted participation and the inclusion of the child, while reducing the anxiety of caregivers.”
The team’s goals were very clear
- Improve the quality of life and well-being for children with cerebral palsy and their caregivers
- Improve the quality of knowledge and awareness that caregivers have regarding the best way to care for children with cerebral palsy
- Understand the pathways, barriers and facilitators for change for both caregivers and children who participate in their program
- Train a group of facilitators to further implement the Getting to Know Cerebral Palsy training.
How did they achieve this?
It all started with the recruitment of children with cerebral palsy from 8 sites across Ghana.
Then, leveraging the LSHTM’s Getting to Know Cerebral Palsy training manual, Marjolein and her team implemented a 1-year training program that included a once-a-month:
- training support program for parent groups using a participatory approach, and
- home visit schedule.
“Parent support groups were established in community settings and invited to participate in the training program,” says Marjolein.
“The training’s emphasis was on adult-learning theory and participatory tools; recognising that adults learn best when they learn by using their own experiences, using a problem-solving approach, and activities which promote an active process of reflection and discussion.”
“A key aspect of the theory of change is the importance of peer support, and of the value of group membership within the support group.”
“The evidence we’ve collected highlights how much parents valued the monthly sessions, and meeting other parents. They valued the feeling that they were not on their own. And for many participants, it offered an additional support mechanism and felt like being part of a family,” she says, based on the qualitative outcome results analysed by Maria Zuurmond, LSHTM research fellow, and her team.
What is covered by the training program?
- A general introduction
- Evaluating your child
- Positioning and carrying
- Everyday activities
- Feeding your child
- Disability in your local community
- Running your own parent support group
- Assistive devices and resources
How did the home visits work?
After each monthly session, a community health worker (often a community health nurse, and/or physiotherapist, physio-assistant or special needs teacher) would visit the participants with a view to following-up on what they learned in the group sessions.
“It was an opportunity to engage with other family members, support parents to apply the lessons they’d learned in the home environment, and promote linkages with other relevant stakeholders in the community,” says Marjolein.
“Some of those important stakeholders would be the direct family, social welfare, education, nutrition services or other health services.”
And the results?
“At the end of the project there was a statistically significant improvement in the quality of life for participants,” says Marjolein.
“The improvement was significant for children with all levels of severity in their cerebral palsy, and across all families.”
The team measured the change in the quality of life for participants using in-depth interviews at 3 points across the year.
These interviews showed that caregivers were experiencing:
- improved knowledge and confidence
- greater emotional happiness
- less feelings of isolation (a recurring comment being: “I am not alone”)
- greater acceptance of their child in a context where stigma and discrimination is very high
- improved resilience
- improved care for their child.
The team also collected evidence that showed the parent groups resulted in:
- a reduction in social isolation
- a forum for psycho-social support
- an opportunity for peer learning
- providing a safe place.
There were some further challenges also identified. The results drew specific attention to the need to:
- include other family members in the program and home visits
- collaborate more extensively with nutritionists, rehabilitation services, education providers and social services.
What is next?
Marjolein tells us that Champion Mothers have been identified in four of the parent groups who are interested in continuing to deliver the training to new groups of parents – with the support of technical staff – in their own communities.
There is also a national Whats App cerebral palsy working group of facilitators who remain networked as a result of the project, and this is likely to continue.
“Outside of Ghana, learnings from this project are being adapted into training for an early intervention program in Uganda,” says Marjolein.
“We have set-up a community of practice online which has more than 300 members across 60 countries. It’s a very active group.”
“We’re very happy that the training manual has also been translated into Spanish, French, Bangla, and Kishwali with plans for an Arabic version and many others to come.”
A second project is building on the work done by Marjolein Meande-Baltussen and her team, with outstanding results. Read more about the Inclusive Child Development Program in Ghana.