Project Seek: Empowering Self-Help Groups for Caregivers of Children with Disabilities in Rural Kenya
A sustainable, community-based inclusive development
Of 150 million children with disability worldwide, eighty percent reside in resource poor settings.
The caregiver, typically the mother or grandmother, tends the child’s basic needs such as shelter, nutrition, clothing, health and well-being. Scarce medical information about disability causation, limited rehabilitation services, poor access to education, and superstitious beliefs that abound in the community (e.g. causation linked to curses or evil spirits), leave the caregiver and child unsupported, stigmatised and isolated. Not surprisingly, long-term care giving has been associated with caregiver fatigue and distress. Furthermore, the extra expenses associated with meeting the child’s needs are felt keenly. Many caregivers themselves have had no (or very little) formal education and struggle to cope with the many demands of caring for a child with disabilities. In such circumstances, the caregiver and child are disenfranchised and potentially marginalised in their own community.
Self-help groups offer a pathway of opportunity for caregivers and their children with disabilities. Identified in the World Health Organisation’s (2010) composite strategy on Community-Based Inclusive Development (CBID), formerly known as Community-based rehabilitation (CBR), self-help groups support people to take control of their lives when they have been alienated from their communities, and to act to improve their own situations.
The power of community-based, culturally driven interventions is captured in the development of self-help groups. Through empowering caregivers, the groups have served to establish sustainable networks of social and economic support and helped to mitigate the effects of severe drought in East Africa.
The research team brings UEA and the Kenya Medical Research Institute (KEMRI) together in partnership. Dr Karen Bunning (UEA) leads the team, working closely with Dr Joseph Gona (KEMRI) who supports group development; Professor Charles Newton (KEMRI–Wellcome funded) and Emeritus Professor Sally Hartley fulfil advisory roles (UEA).
Project SEEK started in June 2015 for a period of three years. With reference to the CBR matrix (WHO, 2010), the aim was to develop 20 self-help groups for around 300 caregivers of children with developmental disabilities in a rural part of Kenya. Income generating activities were commenced early on in set-up. A facilitated intervention guided the members in topical discussion on economic empowerment, personal situation, peer support, community inclusion, access to health, access to education.
Post set-up and intervention evaluations revealed significant gains in caregiver perceptions of social support and the way they viewed their child’s disability to the extent that disabilities were viewed as less severe. Extrinsic factors affecting the caregiver’s role, such as time, information, support and other people to care for their child, were also rated as less of a problem.
Proof of Concept
Having established proof of concept for empowering self-help groups, this work has been captured in some practical guidelines illustrated with cultural drawings. Members of the CBID/CBR Africa network have signed up to trial the guidelines, including Zambia, Malawi, Ethiopia, Madagascar, DRC, Burkina Faso and Togo. Evaluations are planned at strategic points over the next three years.
A three-year follow up study (SEEK-2) commenced in 2018. In association with Kuhenza for the Children’s Foundation, a local non-government funded organization, ongoing facilitation and monitoring are offered to the self-help groups, bringing new opportunities to develop social networks, share experiences and build capacities. We are evaluating the longer-term benefits to the quality of life of caregiver and child with disabilities.
Objectives of SEEK-2
1. Sustainability of the self-help groups through:
a. building capacities for initiating and progressing their activities (income generation, psychosocial support, accessing education and health)
b. developing self-and group-advocacy for growth in in community engagement and inclusion.
2. Impact in low-income regions of the world through:
a. establishing a network of partner organisations who will support the scaling-up of the self-help group developments
b. pilot of self-help group guidelines in other resource-poor regions of the world.
Research Design and Questions
A realist evaluation design is adopted that investigates the mechanisms and conditions that trigger the outcomes. We are asking two key questions:
- What changes and impacts are associated with the self-help groups in terms of quality of life, capacity-building, community engagement and advocacy?
- What is the uptake of the self-help group guidelines in other regions of Africa and how are they being used?
What the caregivers say…
‘We have children with disability. This is what binds us together. We work together, we talk together and laugh together...’
‘We share stories, ask each other how we feel at our homes and give each other assurance that things will change for the better in this group.’
Principal Investigator: Karen Bunning (UEA).
Co Investigator: Joseph K. Gona (Kenya Medical Research Institute: KEMRI).
Advisors: Professor Charles Newton (University of Oxford; KEMRI); Emeritus Professor Sally Hartley (UEA; London School of Hygiene & Tropical Medicine); Dorothy Randu (Educational Assessment and Resource Centre, Kilifi, Kenya); Mary Kifalu (Physiotherapy Department, Kilifi County Hospital, Ministry of Health, Kilifi, Kenya).
Chapter in Book
Gona, J.K., Bunning, K. & Newton, C. (in press). 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.
Gona, J.K., Newton, C.R., Hartley, S. & Bunning, K. (under review). Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation. African Journal on Disability
Bunning, K., Gona, J.K., Newton, C.R. & Hartley, S. (under review). Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms. PLoS ONE
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.
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. https://doi.org/10.1371/journal.pone.0182214.
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.
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.
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.
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.
Gona, J.K., Newton, C.R., Hartley, S. & Bunning, K. (2018). Empowering Self-Help Groups for Caregivers of Children with Disabilities: Pilot Guidelines. UEA, UK & KEMRI. Available from: firstname.lastname@example.org.
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