Patience Mutiti is Motivation's Clinical Capacity Development Manager. She is currently working closely with London School of Hygiene and Tropical Medicine to update their Parent and Caregiver Training material. Here she talks to us about how Parent and Caregiver Training is an integral part of Motivation's work with disabled children and their families. 

Parent and Caregiver Training (PCT) has been part of Motivation programmes since 2009. What first prompted the decision to include PCT?

We first piloted Parent and Caregiver Training in a project in Northern Uganda providing wheelchair services. We were approached by a local partner asking if we could support parents in the community who were struggling to care for their disabled children.

The success of this project prompted us to include it in many of our projects since.

We originally used an existing training package, called Hambisela, which had been developed to fill a gap for parents of children with Cerebral Palsy (CP) in rural South Africa. In 2013, London School of Hygiene and Tropical Medicine (LSHTM) adapted this training into their Getting to Know CP training package, which we have used ever since.

How did the partnership develop?

From our involvement in the network of organisations using Hambisela, we helped review and edit Getting to Know CP which we tested in our 2013 Uganda project. LSHTM also helped us develop some of the Monitoring and Evaluation tools that we use in our PCT programmes. In the years since we have continued to engage with them by providing feedback about our PCT approach and learning from other organisations using the package.

You’re currently consulting on LSHTM’s latest training materials update – what are you updating?

All of the updates are based on feedback from organisations who have been using the package, as well as parents who have participated from the training.

The content will be updated and added to. For example, our facilitators didn’t feel there was enough information around epilepsy. We initially created supplementary materials for our facilitators and have made recommendations on what should be included in the next edition of the training package.

In addition, the language, explanations and images will be updated, including some Motivation images. A new handout for parents will be developed.

How do parents learn about the training?

When we set up a new project we partner with Disabled People’s Organisations or Community Based Organisations that are already working in the community. Facilitators are staff members or volunteers with these organisations, who know and are known in the community. We bring the expertise, knowledge and skills to add value to the work they are already doing.

For example, in an existing Parent Support Group, they may identify parents who have children who present with developmental challenges (many do not have a formal diagnosis). They will then run PCT for those parents while continuing with their normal work as well.

How is the programme sustainable?

Our capacity building approach involves handing over the package and training approach to the existing Community Based Organisations to ensure sustainability of the programme and the ability to continue developing local skills to meet local needs.

Our community partners also identify parents who are interested and able to train to become facilitators themselves. Some of the most successful facilitators are parents of children with CP themselves because they have the commitment and passion to share their knowledge, and they are regarded as positive role models by the parents they support.

Is there anything else you would like our supporters to know about the training?

Often the parents of children with CP don’t have the knowledge or resources to effectively look after their children in way that promotes their development. PCT is a practical way to empower parents and caregivers with the knowledge, skills and confidence to improve their child’s quality of life.  

Could you donate today and help more parents learn to support their disabled child?