ArticleJournal of pediatric psychology2020
Psychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya.
Article in Journal of pediatric psychology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
What it found
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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
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 citations in OpenAlex.
- Mental and Emotional Health of Caregivers of Youth with Sickle Cell Disease: A Systematic Review.Journal of health care for the poor and underserved · 2023Pooled it
- Trial
- Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Exploring the quality of life of caregivers of children with sickle cell disease in a secondary health facility in Ghana.Ghana medical journal · 2025Article
- Hidden stories of caregivers with children living with sickle cell disease in Uganda: Experiences, coping strategies and outcomes.PloS one · 2025Article
- Observational
- Article
- Article
- Psychosocial impacts of caring for a child with a genetic disorder in Accra, Ghana.Journal of community genetics · 2023Article
- The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania.International journal of environmental research and public health · 2022Article
- Biopsychosocial Factors Associated with Parenting Stress in Pediatric Sickle Cell Disease.Journal of clinical psychology in medical settings · 2022Article
- Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain.PloS one · 2022Article
- Caregiver Perception of Sickle Cell Disease Stigma in Ghana: An Ecological Approach.Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & PractitionersArticle
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 2 countries.
Funding
Abstract
objectivesTo characterize the types and magnitude of psychosocial burden present in caregivers who have a child with sickle cell disease (SCD) in Kenya and to identify predictors of caregiver psychosocial burden, including disease severity and financial hardship.
methodsPrimary caregivers (N = 103) of children aged 1-10 years diagnosed with SCD completed surveys assessing multiple domains of caregiver quality of life (QOL), adjustment to child illness, mental health, and financial hardship. Descriptive statistics characterize psychosocial burden, and linear models assess associations.
resultsOn indicators of QOL, caregivers report multiple difficulties across most domains, including daily activities and physical, social, cognitive, and emotional well-being. Daily activities emerged as most burdensome. On indicators of parental adjustment to chronic illness, guilt and worry emerged as the greatest concern, followed by long-term uncertainty and unresolved sorrow and anger; relative to these, they reported higher levels of emotional resources. Financial hardship was high, as caregivers reported moderate to major financial losses due to the time spent caring for their child. General linear model analyses revealed that level of financial hardship was a significant predictor of all negative psychosocial outcomes.
conclusionsResults document that Kenyan caregivers of children with SCD experience difficulties across multiple domains of functioning and that financial difficulties are likely associated with psychosocial burden. Results can guide intervention development for caregivers of children with SCD in low-resource, global contexts.
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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.