Unpaid Carers Supporting Each Other - Our ‘Carers to Carers’ Project in Nepal
It’s now been a year since we trained ten unpaid family carers in Nepal to become Volunteer Health Workers (VHWs), supporting fellow parents of disabled children with their own health, and the health and development of their children.
Through our ‘Carers to Carers’ scheme, which was funded by the James Tudor Foundation and our 2023 Festive Appeal, these VHWs have identified and supported a total of 239 parents and the 239 disabled children they care for. In total, 1020 family members have benefited from the increased knowledge and skills of the parents who received this support.
Training the Volunteer Health Workers
Our ten Volunteer Health Workers underwent a one-month intensive residential training course at the centre of our local charity partner, Self-help Group for Cerebral Palsy (SGCP). The course included modules on health issues commonly experienced by carers and the reasons behind them; the signs and symptoms of these health issues; basic preventative measures; basic physiotherapy exercises; breathing exercises and meditation; signposting to relevant health and therapy services; nutrition; hygiene; supporting the health of the disabled child; promoting movement, communication and sensory development; and exploring alternative care options to help reduce 24/7 caring.
After completing this training, the volunteers began a one-month field placement under the supervision of experienced staff from SGCP and local health professionals. During this time, they engaged directly with families of children with disabilities. The hands-on experience allowed VHWs to apply their knowledge in real-life situations, develop their confidence, and build meaningful relationships with the families they were working with.
In addition to their fieldwork, there were regular online meetings, where VHWs discussed challenges and received support from field staff.
Finally, following the completion of the field training, a two-week refresher course allowed VHWs to reflect on challenges, share successes, and receive targeted support to strengthen their skills.
“SGCP has a very long experience working with children as well as their unpaid carers. The children need lifelong support, but their carers also need support. This ‘Carers to Carers’ project means that carers will be supported by people that really understand their circumstances and problems.”
Providing Support to Fellow Unpaid Carers
Throughout the year-long project, our VHWs carried out home visits to 239 parents caring for a disabled child, providing consistent, personalised, practical and emotional support to families, and creating a reliable and supportive environment for children with disabilities.
"When I found out about my child’s condition, I felt very sad and alone. I stopped talking to people and stayed inside most of the time. I thought I was a bad parent. I was always worried and felt very stressed.
Then the volunteer started visiting our home. She listened to me, talked kindly, and helped me understand my child’s condition. She told me it was not my fault.
I feel much better now. I am not as stressed as before. I know how to take care of my child and also take care of myself. I even talk to other parents now. I am very thankful. These visits have helped me and my family a lot."
During these visits, VWHs supported parents with counselling, stress management and self-care, better equipping them to deal with the challenges of caring for their children. They provided them with training in basic hygiene, including teaching toilet hygiene and how to brush teeth and hair, using adaptive brushes or toothbrush holders if needed. They also supported them with information on healthcare and nutrition, benefitting the whole family.
VHWs also coached parents in basic physiotherapy to improve their children’s motor skills and flexibility. They introduced games and play activities, helping improve their children’s coordination and cognitive skills, and techniques for parents to use to support Activities of Daily Living and communication. Parents were trained to continue these activities independently, fostering a sustainable approach to managing the children’s conditions at home.
Each VHW was equipped with an education and therapy pack, as well as special equipment like customised chair-table sets and toilet chairs to improve comfort, accessibility, and hygiene for disabled children. These resources have greatly helped families carry out therapy at home and support their children more easily and with dignity.
Parents also benefited from learning more about cerebral palsy (or other neurological condition their child has), its symptoms, progression and how to recognise early signs of complications. Learning this from someone who is also caring for a child with a neurological condition, as our VHWs are, meant that the parents felt understood and at ease.
Why ‘Cares to Carers’?
Training volunteers who are unpaid carers themselves has proved invaluable in creating trust between the volunteers and the families, meaning that the advice and information being conveyed are well received. In addition, training unpaid family carers to carry out this important work also increases their profile within the community, promoting greater respect for their experience and their ability to contribute to society.
Our work has reinforced the importance of supporting unpaid family carers. When their well-being is supported, they are better able to provide consistent and high-quality care to their child, reducing feelings of desperation and burnout.
Parents have reported feeling more confident and supported since our volunteers started visiting, and improvements in their children’s movement and health is giving them hope for the future. Our ‘Carers to Carers’ project has reduced feelings of isolation among parents of disabled children and empowered them with knowledge, support and hope for the future.
There is demand from families for this service to continue and we hope to find the funding to enable SGCP to build on the learnings from the project to date and further develop this work to support even more unpaid carers. If you would also like to help us in our work supporting unpaid carers across South Asia, then please do consider giving a gift today.
Thank you to The James Tudor Foundation for providing a grant to get this project started, to the CareTech Foundation for matching donations from the public during our 2023 Festive Appeal, and to our individual supporters – this wouldn’t have been able to happen without you!
"In the beginning, my family thought my child's condition was a communicable disease. Because of this misunderstanding, my whole family isolated us, and I constantly worried about my child’s future.
When the volunteer home visitor started visiting our home, she explained what disability really means. She shared helpful knowledge, cleared up our fears, and helped my family understand the condition better. Now, my whole family accepts my child with love and support. I feel so happy and relieved. I am very thankful for the visit — please continue visiting us regularly."
