A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers

Abstract

Background Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing. Methods A qualitative longitudinal study was conducted to investigate the impact of a training programme, “getting to know cerebral palsy,” with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes. Results Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are “not on their own.” While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network. Conclusions This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.

Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms

“…The challenges of bringing up a child with disabilities were all pervasive, affecting caregiver management of domestic arrangements and their psychological wellbeing. The low mood and sense of helplessness expressed by the caregivers was associated with a lack of support, both within the family and externally in the community as reported previously [5,6,10,17,24). Indeed, the common experience was one of psychological stress and daily challenges, which concurs with the work of Masulani-Mwale [26].…”

“…The set-up of SHGs brought the caregivers together in a movement that was counter to their isolation. The process of identifying themselves in relation to a shared characteristic, that of being a caregiver to a child with disabilities, supported group formation, which was similarly observed in Ghana [5]. The facilitated intervention invited the sharing of personal narratives in a safe environment that was characterised by acceptance and shared experiences in common.…”

“…Not surprisingly, the caregivers reported a greater sense of their own well-being, with more than one caregiver attributing positive changes in their husband to their own participation in the SHG. Whilst a causal relationship between their participation and attitude changes in the family cannot be proven, it is possible that growing confidence in the caregivers was recognised by marital partners and other family members, as reported previously [5,41,42]. The early address of income generation activities helped to grow capacities amongst the SHG membership.…”

“…Zimmerman and colleagues [31][32][33][34]58] might explain this as the antithesis of empowerment. Having a child with a disability was considered generally incongruent with acceptability in the prevailing culture, and indeed triggered negative responses from others in the family and in the community as reported previously [4,5,[17][18][19][21][22][23][24][25][26]. Thus both caregiver and child were effectively marginalised in their own community, with a lack of knowledge, limited support and no opportunity for joining their efforts with others-critical components of the empowerment construct described by Perkins & Zimmerman [58].…”

“…Self-help initiatives have been reported with a range of stakeholder groups in low and middle income countries, including caregivers of children with disabilities in Ghana [5]; mental health service users in Ghana [38] and Uganda [39]; economic and livelihood groups for women in South Asia [14,40,41]; social support for adolescents with visual impairments in Jordan [42]. Reported benefits include financial support [38,41]; social support and acceptance by other members of the family [5,41,42]; growth in confidence for self-expression and reduction in domestic abuse [43] and improved family relations [44]. However, despite such positive outcomes, SHGs have been criticised for a lack of research rigour with insufficient detail on processes and activities underpinning the outcomes [40].…”