About

At Walezi-caregivers Kenya, we believe in the power of self-help groups to make a difference in the lives of caregivers. By supporting these groups, we empower caregivers of children and family members with disabilities in Kenya to take charge of their own well-being and create a supportive community.

About Caregivers

We work with caregivers of children and family members with disabilities through the creation of self-help groups that empower the membership.


The caregiver, usually the parents or grandmother, looks after the person’s basic needs such as shelter, food, clothing, health, education and general well-being. Caregivers often feel unsupported, stigmatised and isolated because of scarce information about the causes of disability, limited rehabilitation services, poor access to education, and traditional beliefs in the community (e.g. disability is linked to curses, evil spirits or witchcraft). Long-term caregiving has been associated with fatigue and distress. Furthermore, the extra expenses associated with meeting the person’s needs are an ever-present challenge. Many caregivers struggle to cope with the demands of caring for someone with disabilities alongside the rest of their family. In such circumstances, the caregiver and disabled person are disenfranchised and potentially marginalised in their own communities. Not surprisingly, many caregivers feel helpless in the face of such challenges and very much alone. 

“People at home have very little to do with the child. The child is lonely most of the time and there is little assistance from family members and the community.”

”The distance to health facilities is too far, particularly when there is no support from family members or the community. Sometimes these children are seen as sources of evil. This hurts us!"

We think that this situation is not acceptable and this is why we exist.

About our operation

We work with our partner organisation Walezi Foundation, a NGO based in Kilifi County, Kenya. We have separate boards and distinct responsibilities.


The UK-based Walezi-caregivers Kenya funds the salaries of the Executive Director and key staff employed in the Kenyan-based NGO. It is also responsible for raising funds to support the development, running and monitoring of the self-help groups. In particular, it focuses on sponsorship for group capital projects that enable their economic growth.


The Kenya-based NGO (Walezi Foundation) is responsible for operations on the ground. This involves regular visits to monitor group activities, providing guidance on livelihood activities and capital projects, and ensuring that the groups run effectively and well. The two organisations work closely together and jointly agree on what projects should be funded.


In line with the requirements of the UK Charities Commission, control is exercised over all aspects of funding. This includes the transfer of funds to the Kenyan NGO for all running costs. The UK-based charity (Walezi-caregivers Kenya) with our partner NGO review and approve all capital projects . We release funds to the Kenyan NGO on a quarterly basis according to the contractual agreement between our organisations. At the end of each quarter the Kenyan NGO issues a summary report on all expenditure incurred and activities carried out.


The UK trustees have backgrounds in social work, community-based practices, education health, financial management and international development. Two of the trustees have worked together on a research and development programme in Kenya since 2007. We volunteer our time for free, ensuring the vast majority of our funding goes to Kenya. The exception is financial support for annual visits to Kenya for the purpose of review and evaluation of all aspects of the work on the ground. These visits are key to our good governance, help to ensure the integrity of our work, and that funds are used for the purpose intended.

About our history

Between 2007 and 2023, we carried out a series of interconnected research projects into disability and community support at the Kenyan Medical Research Institute (KEMRI) in Kilifi [1]. The results have been published in ten journal articles and one book chapter and informed the development of this Walezi initiative.


Based on development work with community groups [2], the research team started with a situation analysis to find out about the lived experiences of caregivers and to assess the range of support that was available. The results showed that support services were under-resourced and often unavailable at a community level. Where services existed, there was inadequate coverage and poor professional practice [3-4]. This was followed up by a home-based intervention where the caregiver served as agent for change using different ways of communicating other than spoken words. After the intervention, we observed improved caregiver well-being, positive changes to caregiver perceptions of the child’s communication, and some expansion to the child’s social activities [5-6]. However, questions around sustainability and coverage remained. This was followed by disability awareness training delivered to health worker and women groups in the community, and led by persons with lived experience of disability. After the training we found positive changes to the values and attitudes espoused by the community groups [7-8]. Finally, self-help groups for caregivers of children growing up with disabilities were set up. Caregiver participation in self-help groups was associated with their greater personal agency, increased social support and perceived reduction in the severity of their child’s disability [9-10]. In 2020 we contributed a chapter about our work entitled ‘Cultural and contextual challenges in resource-poor countries; the case of sub-Saharan Africa’ in a book about enabling participation of people with disabilities [11].

Publications


  1. ​Bunning, K., Gona, J., Newton, C. and Hartley, S. (2021). Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya. Tizard Learning Disability Review 27 (1), 1-10. DOI 10.1108/TLDR-08-2021-0023.
  2. Hartley, S., Murira, G., Mwangoma, M., Carter, J. & Newton, RJC. (2009). Using community/researcher partnerships to develop culturally relevant intervention for children with developmental disabilities in Kenya. Disability & Rehabilitation 31(6), 490-499.
  3. Bunning, K., Gona, J.K., Odera-Mung’ala, V., Newton, C.R., Geere, J., Hong, C.S. & Hartley, S. (2014). Survey of rehabilitation support for children 0-15 years in a rural part of Kenya. Disability & Rehabilitation 36(12), 1033-1041.
  4. Bunning, K., Gona, J.K., Buell, S., Newton, C.R., & Hartley, S. (2013). Investigation of practices to support the complex communication needs of children with hearing impairment and cerebral palsy in a rural district of Kenya. International Journal of Language & Communication Disorders 48(6), 689-702.
  5. Gona, J.K., Newton, C.R., Hartley, S. & Bunning, K. (2014). A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers’ experiences? Child: Care, Health & Development 40(1), 29-41.
  6. Bunning, K., Gona, J.K., Newton, C.R., & Hartley, S. (2014). Caregiver perceptions of children who have complex communication needs following a home-based intervention using augmentative and alternative communication in rural Kenya: An intervention note. Augmentative & Alternative Communication 30(4), 344-356. https://doi.org/10.1371/journal.pone.0182214.
  7. Bunning, K., Gona, J.K., Newton, C.R. & Hartley, S. (2017). The perception of disability by community groups: Stories of local understanding, beliefs and challenges in a rural part of Kenya. PLoS ONE 12(8): e0182214.
  8. Gona, J.K., Newton, C.R., Hartley, S. & Bunning, K. (2018). Persons with disabilities as experts-by-experience: using personal narratives to affect community attitudes in Kilifi, Kenya. BMC International Health & Human Rights 18(18). https://doi.org/10.1186/s12914-018-0158-2.
  9. Bunning, K. Gona, J.K., Newton, C.R., Andrews, F., Blazey, C., Ruddock, H., et al. (2020). Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms. PLoS ONE 15 (3): e0229851. https://doi.org/10.1371/journal.Pone.022985.
  10. Gona, J.K., Newton, C., Hartley, S. & Bunning, K. (2020). Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation. African Journal of Disability 9(0), a650. https://doi.org/10.4102/ajod.v9i0.650.
  11. Gona, J.K., Bunning, K. & Newton, C. (2020). Cultural and contextual challenges in resource poor countries: the case of sub-Saharan Africa. In: Enabling Participation in Childhood Onset Neurodisability: Optimising Outcomes, ed. by D. Green & C. Imms. London: McKeith Press.
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