Long-term caregiving in low-income countries has been associated with fatigue, financial difficulties and parenting distress. Caregivers are affected by paucity of information concerning the child’s disability, social stigma of caring for such a child, particularly when the child’s condition is viewed as the result of curses or evil spirits, and the extra expenses associated with meeting the child’s needs. Children with disabilities are more likely to have lower school attendance than their non-disabled counterparts, with limited support available generally. For example, there is wide variation in rehabilitation services reported across the African continent, including poor coordination of delivery, restricted access to services at community level and a continuing need for development work. Health-based rehabilitation services that exist tend to be clustered around urban-based institutions with report of serious limitations in coverage and capacity. In the circumstance of limited resources and social isolation, the caregiver and the child with a disability are disenfranchised and potentially marginalised in their own community. Project SEEK aims to establish self-help groups for caregivers of children with developmental disabilities in a rural part of Kenya.
The research aim is to establish the outcomes associated with self-help groups in addressing common problems experienced by the caregivers of children with disabilities. The outcomes-focused questions are:
1. What changes are associated with empowering self-help groups for caregivers of children with disabilities?
2. If there are changes associated with the self-help group process, how does it do so?
There are two development aims associated with the project. The first is to improve the health and educational opportunities for children with disabilities. The second is to generate knowledge on the development process of community-based, self-help groups relating to caregivers and their children with disabilities in rural Kenya, which may be applicable to caregivers in similar situations in other low-income countries. The development-focused questions are:
1. What health and educational opportunities arise for children with disabilities in the locations where self-help groups develop?
2. What are the key components that characterise the development process of self-help groups? and
3. How does this information translate into guidance for caregivers of children with disabilities in other similar contexts?
The study adopts a participatory action research approach, which is in harmony with the philosophy of community-based rehabilitation (CBR), as well as supporting its central aim to improve conditions and practices for caregivers and children with disabilities across a range of settings. It employed mixed methods. The participants will be instrumental in shaping the self-help process and in devising the strategies to alleviate the challenges of caregiving. The groups are being supported by a facilitated intervention based on the ‘empowerment’ component of the CBR guidelines (WHO, 2010). The participants are instrumental in shaping the self-help process and in devising the strategies to alleviate the challenges of caregiving.
The setting is Kilifi County (area: 12,610Km2; poverty level: 71.4 per cent - Kenya Commission Revenue Allocation). Based on a county-wide population of 1,109,735 inhabitants, 50 per cent will be children (n=554,868). Using a 5 per cent prevalence of childhood disability , it is estimated there are 27,743 children with a disability. The established community groups (women and health workers) who we worked with on our previous project (Pre-CALL) are instrumental in bringing caregivers together and in facilitating the group processes. The criteria for participant inclusion were as follows:
- Primary caregiver is 18 years old and above and cares for a child (0-15 years) with a developmental disability present from birth, noted in first five years of life or considered long-term;
- Child shows a deficit(s) in one or a combination of the following areas: seeing, hearing, moving, dribbling, drinking and eating, paying attention, sitting still, learning, understanding, or experiences epileptic seizures (fits);
- Child’s disability may be associated with a primary condition, e.g. intellectual disability; deafness; visual impairment; autistic spectrum condition; cerebral palsy; multiple disabilities.
It was proposed to set up around twenty self-help groups for caregivers of children with disabilities across the five constituencies in Kilifi County.The intervention is based on the WHO CBR guidelines where ‘self-help’ features in the ‘Empowerment’ component of the CBR matrix . Self-help groups are informal groups where people come together to address their common problem’ (p.37). In the current proposal, the focus of the self-help is the caregivers of children with disabilities (0-15 years), in many cases this will be the mothers, as the natural advocates for their children. Therefore the self-help process involves those individuals who are responsible for the child’s welfare as potentially powerful agents for change. Of course, the child’s responsibility for self-help is expected to grow across the life course. Through engaging in a range of activities focusing on health, rehabilitation, education, microcredit and campaigning, empowerment of the participants may be realised. The idea is that people come together to achieve greater understanding of their particular circumstances, e.g. caring for a child with a disability, and to address the challenges in ways that make sense to them and make the existing situation better.
Outputs associated with benefits to caregiver and child include:
- improved perceived social support by caregivers;
- a perceived reduction in caregiver perception of the child’s disability;
- increase in social participation of child and caregiver;
- improved quality of life;
SEEK will yield information on the process and potential of ‘empowering self-help’ groups. It therefore has the potential to make a major contribution to CBR knowledge. At the end of the project we will produce a booklet that provides accessible, practical and culturally-relevant guidance for the development of self-help groups in other similar communities where people with disabilities reside; in Kenya, across Africa and beyond. It is envisaged that the booklet will capture the self-help journeys taken by the groups, so that others may learn from their experience and be guided towards establishing similar initiatives. Its cultural relevance, low-cost and sustainability means it will have the facility to be replicated in other African countries and link into community-based rehabilitation (CBR) initiatives worldwide.
Principal Investigator: Karen Bunning (UEA).
Co-I: Joseph K. Gona (Kenya Medical Research Institute: KEMRI)
Advisor: Professor Charles Newton (University of Oxford; KEMRI)
Advisor: Emeritus Professor Sally Hartley (UEA; London School of Hygiene & Tropical Medicine)Advisor: Dorothy Randu (Educational Assessment and Resource Centre, Kilifi, Kenya.
Mary Kifalu (Physiotherapy Department, Kilifi County Hospital, Ministry of Health, Kilifi, Kenya)