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  11. Silent Struggles: Assessing Physical And Psychosocial Burdens Among Caregivers Of Children With Sickle Cell Disease In Western Sudan-a Cross-sectional Study

Silent struggles: Assessing physical and psychosocial burdens among caregivers of children with sickle cell disease in western Sudan-A cross-sectional study

Weaam Abdallah1, Wisal Abbas2, Swsan A M Elsharif1

  • 1Faculty of Medicine, University of Khartoum, Khartoum, Sudan.

Plos One
|November 25, 2025

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View abstract on PubMed

Summary
This summary is machine-generated.

Caregivers of children with sickle cell disease (SCD) in Sudan face significant burdens. Over 53% experience moderate to severe challenges, highlighting the need for support systems for these families.

Area of Science:

  • Hematology
  • Public Health
  • Psychology

Background:

  • Sickle cell disease (SCD) is a significant cause of illness and death, particularly in Sudan's western region.
  • Caregiving for children with SCD imposes considerable psychosocial and economic strain on families due to the lack of effective treatments and the demanding nature of care.

Purpose of the Study:

  • To assess the physical and psychosocial burdens experienced by caregivers of children with SCD in western Sudan.
  • To identify factors associated with the level of caregiving burden.

Main Methods:

  • An observational, cross-sectional study was conducted with 123 caregivers at the Sudan Sickle Cell Anaemia Centre in El Obeid.
  • The abridged Arabic Zarit Burden Interview Scale (ZBI-A) was used for data collection.
  • Statistical analysis included SPSS v.20, Mann-Whitney U, and Kruskal-Wallis tests.

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Main Results:

  • 46.8% of caregivers reported mild burden, 35.5% moderate, and 17.7% severe burden.
  • Higher burden scores were significantly associated with residing outside El Obeid, lower maternal and paternal education levels, lower paternal employment status, and children aged 5-9 years.

Conclusions:

  • A significant proportion of caregivers for children with SCD in western Sudan experience moderate to severe caregiving burdens.
  • Socioeconomic factors, including education and employment, and geographical location are linked to the intensity of caregiver burden.