ArticlePloS one2022
Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain.
Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed, 9 citations in OpenAlex.
- 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
- A Scoping Review of Qualitative Studies on Inpatient Care for Individuals with Sickle Cell Disease.Journal of general internal medicine · 2026Article
- Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium.Journal of public health (Oxford, England) · 2026Article
- Hidden stories of caregivers with children living with sickle cell disease in Uganda: Experiences, coping strategies and outcomes.PloS one · 2025Article
- Observational
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- Psychological experience of Juvenile patients' parents in Fangcang shelter hospital during the Omicron wave of COVID-19 pandemic in Shanghai, China: a qualitative study.BMC public health · 2022Article
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Authors and funding
11 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThis study aimed to determine caregivers' perspectives on difficulties encountered while seeking care for adolescents with sickle cell disease (SCD). It explored the social, emotional, and financial impact of caring for an adolescent with SCD on their caregivers. STUDY
designA mixed-method study in a major tertiary care hospital in Bahrain was conducted between June and August 2019. Cross-sectional questionnaires and thematic analyzed interviews were performed with 101 and 18 Bahraini caregivers of adolescents with SCD (aged 10-18 years), respectively.
resultsLack of parking lots (52.5%) and traffic jams (27%) were identified as the most common challenges in seeking hospital care for adolescents with SCD. These difficulties, including prolonged waiting in the emergency room, discouraged more than half of the caregivers who preferred to seek care from smaller healthcare centers. Most caregivers reported receiving a high degree of support from their families, who emotionally encouraged them to facilitate patient care (73.3%). Therefore, their relationships with their friends, colleagues, and relatives were not significantly affected. Catastrophic health expenditure occurred in 14.8% of caregivers. Qualitative themes that emerged were A) the intricacy of caring for adolescents with SCD, B) dissatisfaction with hospital facilities, and C) insufficient healthcare services, wherein caregivers reported adolescents' experiences with services during hospital visits. Subthemes for the intricacy of caring for adolescents with SCD were 1) the psychological tragedy, summarizing the initial caregivers' feelings after the confirmed diagnosis, 2) caregiving hardships that described the caregivers' emotional and health burden while accepting and adjusting to the disease, and 3) the cost of care on families, which highlights the financial burden of the disease on families.
conclusionThe caregivers of adolescents with SCD experienced several overwhelming challenges, including problems in accessing healthcare and receiving medical services, in addition to influences on the emotional, financial, and social aspects of their lives.
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