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

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.

Group Care in the first 1000 days: implementation and process evaluation of contextually adapted antenatal and postnatal group care targeting diverse vulnerable populations in high-, middle- and low-resource settings.

BACKGROUND: Group care (GC) improves the quality of maternity care, stimulates women's participation in their own care and facilitates growth of women's social support networks. There is an urgent need to identify and disseminate the best mechanisms for implementing GC in ways that are feasible, context appropriate and sustainable. This protocol presents the aims and methods of an innovative implementation research project entitled Group Care in the first 1000 days (GC_1000), which addresses this need. AIMS: The aim of GC_1000 is to co-create and disseminate evidence-based implementation strategies and tools to support successful implementation and scale-up of GC in health systems throughout the world, with particular attention to the needs of 'vulnerable' populations. METHODS: By working through five inter-related work packages, each with specific tasks, objectives and deliverables, the global research team will systematically examine and document the implementation and scale-up processes of antenatal and postnatal GC in seven different countries. The GC_1000 project is grounded theoretically in the consolidated framework for implementation research (CFIR), while the process evaluation is guided by 'Realistic Evaluation' principles. Data are gathered across all research phases and analysis at each stage is synthesized to develop Context-Intervention-Mechanism-Outcome configurations. DISCUSSION: GC_1000 will generate evidence-based knowledge about the integration of complex interventions into diverse health care systems. The 4-year project also will pave the way for sustained implementation of GC, significantly benefitting populations with adverse pregnancy and birthing experiences as well as poor outcomes.