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Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: 1 Process evaluation 2

13 14 Background: Caring for a child with disabilities in a resource-poor setting brings many challenges 15 to the caregiver. We examined the development of self-help groups for caregivers in a rural part 16 of Kenya. 17 18 Objectives: To conduct a process evaluation on the development of self-help groups during a 10- 19 month set-up period, focusing on implementation and mechanisms associated with their functional 20 status. 21 22 Methods: Using a realist evaluation project design, we set-up twenty self-help groups for 254 23 caregivers. A process evaluation was conducted to investigate implementation and mechanisms 24 of impact. Implementation focused on caregiver registration, community group support and 25 monitoring visit compliance. Data were collected from group registers, records of meetings and 26 field notes. Mechanisms of impact employed a framework of Strengths-Weaknesses- 27 Opportunities-Threats to review the groups at the end of the 10-month set-up period. 28 29 Results: Recruitment resulted in registration of 254 participants to 18 groups - 2 groups disbanded 30 early. Post-evaluation there were 11 active and 7 inactive groups. Compliance with the monitoring 31 visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. 32 The active groups were characterised by strong leadership and at least one successful income 33 generation project; the inactive had inconsistent leadership and had dishonest behaviour both 34 within the group and/or externally in the community. Mediators associated with functional status 35 included: available literacy and numeracy skills, regular meetings with consistent attendance by 36 the members, viable income generating projects, geographical proximity of membership and 37 strong leadership for managing threats. 38 39 Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their 41 geographical proximity, regular meetings of the group, viable income generating projects, and 42 strong leadership.

• The child's disability was associated with a primary condition, e.g. cognitive impairment; 166 deafness; visual impairment; autistic spectrum condition; cerebral palsy; multiple 167 disabilities.

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Caregivers were excluded where the child's condition was temporary and possibly associated with 170 a medical trauma, e.g. fractured limb, and likely to resolve with appropriate treatment, or related 171 to a need that could be resolved through the provision of corrective devices, e.g. glasses for 172 myopia.

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In order to engage the community in each targeted sub-location and to secure the support of the 175 sub-Chief responsible for community affairs, a field worker, a resident of Kilifi, went to the 176 designated sub-chief's office to arrange a visit by the project co-ordinator (also a local resident).

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At the meeting, project information was provided to the sub-Chief and any questions were fielded.

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Caregiver recruitment was carried out by 20 existing community groups (women groups: WG; 179 community health worker groups: CHW), who had participated in a previous study on disability County). An inaugural meeting was arranged for each SHG development site. Members of the caregivers to this first meeting to learn about the project. Informed consent was recorded for those caregivers who wanted to participate in the development of SHGs, whereby information was read 187 out, questions were addressed and participation decisions were recorded by signature or 188 thumbprint.

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Process evaluation 191 192 Process evaluation was carried out during the set-up phase of the project (over 10 months). It After the initial meeting for information sharing and recording consent, those who were interested 201 in taking part were registered individually using a prepared excel spreadsheet addressing the    The SWOT analysis was carried out collaboratively by the first author, a native of the area, who  The last stage involved producing two summary SWOT matrices for the active groups and the 242 inactive groups. Similar items were categorised and assigned a label. These were reviewed and 243 discussed by the two researchers until agreement was achieved. Finally, a single SWOT matrix 244 was rendered that combined the two SWOT summary matrices indicating commonalities and 245 differences according to functional status.   Table 3. Of the inactive groups, 2 of the 7 came together 300 as a group for less than a three-month period before disbanding. The remaining 5 groups continued 301 to meet for between 3 to 5 months. Follow-up visits were arranged when the membership failed to 302 attend a monitoring visit, by contacting the relevant Chairperson. However, these were largely 303 unsuccessful (see table 1). The inactive SHGs showed inconsistent attendance and poor 304 representation of the membership at the visits with as few as 1 or 2 members being present on 305 occasions.   Internal factors were reflected in strengths and weaknesses of all the groups, and external factors 343 in the opportunities and threats. However, the balance varied between active and inactive groups, 344 with the former being weighted towards strengths and opportunities, and the latter towards 345 weaknesses and threats. activities, enabled the groups to grow. However, the active groups were not without weaknesses.

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Two groups relied on a few caregivers with poor commitment from the rest of the members. Such It is possible that the embryonic status of the groups rendered them as vulnerable to disruption. In In a context of scarce reporting of development work of this nature, the strengths of the current 466 study lie in the report of contrasting features of active and inactive groups. However, information on caregiver attendance of group meetings was recorded inconsistently and could not, therefore, be reported with any accuracy. The SWOT analyses were conducted at the end of the set-up period.

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However, a SWOT analysis at the midway point may have yielded further information about the 470 development process. This would require more extensive resources for the research.

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The functional status of SHGs, their active or inactive status at the end of a set-up period, appeared 475 to be associated with characteristics and processes both within and external to the groups. Threats Finally, the active participation of caregivers in newly formed SHGs is subject to conditions both 499 external and internal to the group. In order to sustain group development and to achieve growth in 500 self-help activities, pathways for strategic support and capacity-building need to be in place at the 501 start of the set-up. In such circumstances the approach to self-help groups has the potential to