Caregiver-related challenges faced by caregivers of children aged 1-5 years with Sickle Cell Disease at China-Uganda Friendship Hospital, Kampala District. A cross-sectional study.

Authors

  • Shamillah Katusiime Mildmay Uganda School of Nursing and Midwifery Author
  • George Masete Mildmay Uganda School of Nursing and Midwifery Author
  • Hasifa Nansereko Mildmay Uganda School of Nursing and Midwifery Author
  • Jane Frank Nalubega Mildmay Uganda School of Nursing and Midwifery Author
  • Immaculate Prosperia Naggulu Mildmay Uganda School of Nursing and Midwifery Author
  • Francisco Ssemuwemba Mildmay Uganda School of Nursing and Midwifery Author

DOI:

https://doi.org/10.51168/kcrpg848

Keywords:

Caregiver challenges, Sickle Cell Disease, emotional stress, financial hardship

Abstract

Background

The study aimed to identify the caregiver-related challenges faced by caregivers of children aged 1-5 years with Sickle Cell Disease at China-Uganda Friendship Hospital, Kampala District.

 Methodology:

The study used a descriptive cross-sectional design to collect data at one point in time. It was conducted at China-Uganda Friendship Hospital, Naguru, Kampala, a public hospital providing specialized sickle cell services. The study targeted caregivers of children aged 1-5 years with sickle cell disease. Using Krejcie and Morgan’s table, a sample size of 40 caregivers was selected through convenience sampling. Data were collected over four days using a semi-structured questionnaire. Data were analyzed using descriptive statistics in Microsoft Excel, with ethical approval and informed consent obtained.

 Results:

The study involved 40 caregivers, of whom 21 (52.5%) were female and 19 (47.5%) male. Most respondents were aged 29-39 years, accounting for 23 (57.5%), followed by 10 (25%) aged 40-49, while only 7 (17.5%) were aged 18-28 years. More than half 22 (55%) knew common sickle cell crisis triggers, mainly cold exposure 10 (45.5%). Most caregivers 32 (80%) always felt stressed. Half of 20 (50%) could not afford treatment, and 27 (67.5%) reported hospital visits affected their work. Partners supported care in 24 (60%) cases.

 Conclusion:

Caregiver-related challenges included emotional stress, financial hardship, and disrupted work schedules caused by frequent hospital visits.

 Recommendation:

Caregivers should seek guidance from health workers on home care and complications, and adhere to follow-up visits and treatments.

Author Biographies

  • Shamillah Katusiime, Mildmay Uganda School of Nursing and Midwifery

    a student pursuing a diploma in midwifery at Mildmay School of Nursing and Midwifery

  • George Masete, Mildmay Uganda School of Nursing and Midwifery

    research supervisor at Mildmay School of Nursing and Midwifery

  • Hasifa Nansereko, Mildmay Uganda School of Nursing and Midwifery

    research supervisor at Mildmay School of Nursing and Midwifery

  • Jane Frank Nalubega, Mildmay Uganda School of Nursing and Midwifery

    research supervisor at Mildmay School of Nursing and Midwifery

  • Francisco Ssemuwemba, Mildmay Uganda School of Nursing and Midwifery

    research supervisor at Mildmay School of Nursing and Midwifery

References

1. Adib-Hajbaghery, M., & Ahmadi, B. (2019). Caregiver burden and its associated factors in caregivers of children and adolescents with chronic conditions. International Journal of Community Based Nursing and Midwifery, 7(4), 258–269.

2. Ajinkpang, S., Anim-Boamah, O., Bimpong, K. A., Kanton, F. J., Pwavra, J. B. P., & Abdul-Mumin, A. (2022). Sickle cell disease in children: Knowledge and home-based management strategies among caregivers at a tertiary facility in Northern Ghana. BioMed Research International, 2022, Article 3384813. https://doi.org/10.1155/2022/3384813

3. Ampomah, M. O., Atkin, K., Ohene, L. A., Achempim-Ansong, G., Korsah, K. A., & Laari, L. (2024). Financial strain and resilience: A qualitative exploration of parental perspectives on caring for children with sickle cell disease in Ghana. BMC Health Services Research, 24(1), 1380. https://doi.org/10.1186/s12913-024-11380-8

4. Cardinali, P., Migliorini, L., & Rania, N. (2019). The caregiving experiences of fathers and mothers of children with rare diseases in Italy: Challenges and social support perceptions. Frontiers in Psychology, 10, 1780. https://doi.org/10.3389/fpsyg.2019.01780

5. Namaganda, P., Nantume, P., Mubiru, K. R., Twimukye, A., & Wiltshire, C. S. (2024). Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda: A qualitative study. BMC Health Services Research, 24(1), 666. https://doi.org/10.1186/s12913-024-10862-1

6. Ojelabi, A. (2024). Sickle cell disease in Africa. In Public Health in Sub-Saharan Africa (pp. 140–157). Springer.

7. Sharif, L., Basri, S., Alsahafi, F., Altaylouni, M., Albugumi, S., Banakhar, M., Mahsoon, A., Alasmee, N., & Wright, R. J. (2020). An exploration of family caregiver experiences of burden and coping while caring for people with mental disorders in Saudi Arabia: A qualitative study. International Journal of Environmental Research and Public Health, 17(17), 6405. https://doi.org/10.3390/ijerph17176405

8. Twafleh, A. M. (2024). Knowledge gaps and caregiving challenges among caregivers of children with sickle cell disease in Nairobi County, Kenya. African Journal of Health Sciences, 37(2), 112–121.

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Published

2026-05-01

Issue

Section

Section of Social Pediatric

How to Cite

Caregiver-related challenges faced by caregivers of children aged 1-5 years with Sickle Cell Disease at China-Uganda Friendship Hospital, Kampala District. A cross-sectional study. (S. Katusiime, G. Masete, H. Nansereko, J. F. Nalubega, I. P. Naggulu, & F. Ssemuwemba, Trans.). (2026). SJ Pediatrics and Child Health Africa, 3(2), 7. https://doi.org/10.51168/kcrpg848

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