ArticleChild: care, health and development2019
A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers.
Article in Child: care, health and development, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 57 papers, 2 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
57 citing papers in PubMed, 2 syntheses or guidelines pooled it, 116 citations in OpenAlex.
- Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review.F1000Research · 2023Pooled it
- Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil.International journal of environmental research and public health · 2020Pooled it
- Impact of the Akwenda Intervention Program for cerebral palsy on caregiver-perceived burden, stress, and psychosocial functioning: A cluster-randomized trial in Uganda.Developmental medicine and child neurology · 2025Trial
- The F-words for childhood development in community-based physical activity programmes for children with physical disabilities: A scoping review.Developmental medicine and child neurology · 2026Review
- The Role of Social Support and Positive Youth Development Attributes in Family Resilience Processes: an Actor-Partner Interdependence Approach.Journal of youth and adolescence · 2026Article
- Managing stigma and reconstructing caregiver identity: a qualitative descriptive study of family caregivers of children with cerebral palsy in China.Frontiers in psychology · 2026Article
- Perceived benefits of implementing a caregiver-led training programme for caregivers of children with cerebral palsy in rural Mangochi, Malawi: a qualitative exploration.The Pan African medical journal · 2026Article
- Article
- Feeding and swallowing in cerebral palsy: Caregiver burden, quality of life and support needs.The South African journal of communication disorders = Die Suid-Afrikaanse tydskrif vir Kommunikasieafwykings · 2025Article
- Mapping play-based interventions for children with disabilities in LMICs: a scoping review on cultural relevance, implementation, and impact.EClinicalMedicine · 2025Article
- Antibiotic use for common illnesses in children living with disability: a multi-country study across 42 low- and middle-income countries.EClinicalMedicine · 2025Article
- The Sustainability of Self-Help Groups for Caregivers of Children With Disabilities in Kilifi, Kenya: The Changing Context of the COVID-19 Pandemic.Child: care, health and development · 2025Article
- Caregiver capabilities: Healthcare interventions for children with developmental disabilities.African journal of disability · 2025Review
- Centering caregiver voices on caregiving needs of children with neurodevelopmental disorders in low-resource settings.PloS one · 2025Article
- Care perspectives: Mothers of children with disabilities in a peri-urban setting in South Africa.African journal of disability · 2025Article
- Challenges of Polish families related to caring for a disabled child at home: a cross-sectional study.Scientific reports · 2024Article
- From legislation to actual health service: evaluation of health provisions in the disability law of Ghana by adolescents with mobility and visual impairments and their families.BMC health services research · 2024Article
- Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the 'BMJ global health · 2024Article
- Perspectives of practitioners on support for caregivers of children with intellectual disability.Curationis · 2024Article
- Benefits of being part of a support group for caregivers of children with multiple disabilities: a qualitative study.Revista peruana de medicina experimental y salud publica · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 6 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFour 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.
methodsA 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.
resultsLow 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.
conclusionsThis 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.