Disease burden and associated factors among caregivers of children with congenital heart disease at tertiary hospitals in Addis Ababa, Ethiopia – Nature.Com 20:19 

Disease burden and associated factors among caregivers of children with congenital heart disease at tertiary hospitals in Addis Ababa, Ethiopia

Scientific Reports , Article number:  (2026) Cite this article

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Abstract

Congenital Heart Disease (CHD) is a structural or functional abnormality of the heart that is present from birth. Children with CHD need specialized care, treatment, and ongoing follow-up for various common conditions, which can place significant demands on their caregivers. So, caregivers have a higher risk of experiencing emotional distress, anxiety, social isolation, feelings of hopelessness, and even suicidal ideation. It is influenced by culture, rules, financial, and the system of health and care services. This study aimed to analyze the burden of care and associated factors among caregivers of children with congenital heart disease at Tertiary Hospitals in Addis Ababa, Ethiopia, 2024. This cross-sectional study included 301 caregivers of children with congenital heart disease recruited from the Children’s Medical Centers at Tertiary Hospitals in Addis Ababa. Face-to-face interviews with caregivers had been done. The demographic and disease-related data were collected. The Zarit Burden Interview (ZBI) was administered to assess disease burden. It was conducted from October 2023 to January 2024. About 85% of caregivers had a mild-to-severe burden. The findings revealed that caregivers in the age group of above 30 years had a significantly milder-to moderate burden of care compared to caregivers below 30 years (p = 0.012). Those with higher monthly incomes were 54% less likely to experience a mild to moderate burden, 66% less likely to experience a moderate to severe burden, and 81% less likely to experience a severe burden compared to those with little/no/ burden. Caregivers with rural residency were 52% more likely to experience a mild to moderate burden, 71% more likely to experience a moderate to severe burden, and 85% more likely to experience a severe burden compared to those with no/little burden. Caregivers with higher or college education had 77% lower likelihood of experiencing a moderate to severe burden and 98.8% lower likelihood of experiencing a severe burden compared to those with little or no education. Caregiver burden among caregivers of children with congenital heart disease is significantly high in the study area. Caregivers’ age, educational status, residency, and monthly income were associated with caregiver burden.

Data availability

The datasets generated and analyzed during the current study are not publicly available due to their containing information that could compromise the privacy of research participants, but are available from the corresponding author (MT) on reasonable request.

Abbreviations

AOR:

Adjusted odds ratioCHD:

Congenital heart diseaseCOR:

Crude odd ratioHRQOL:

Health related quality of lifeSPHHMC:

St Paul Hospital Medical Millennium CollegeSPSS:

Statistical package for social scienceWHO:

World Health Organization

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Acknowledgements

The authors would like to thank St Paul Hospital Medical Millennium College administration, Health workers, and data collectors. We are also indebted to the study participants for their kind cooperation.

Funding

There was no funding or sponsoring organization for this study.

Author information

Authors and Affiliations

  1. Department of Pediatrics, College of Medicine and Health Sciences, St. Paul Hospital Millennium Medical College, Adiss Abeba, EthiopiaGetenet Awoke & Temesgen Tsega
  2. Department of Biomedical Sciences, College of Medicine and Health Sciences, Debre Markos University, P.O. Box:269, Debre Markos, EthiopiaMelkamu Tilahun
  3. Department of Health Informatics, College of Medicine and Health Sciences, Debre Markos University, Debre Markos, EthiopiaBayou Tilahun Assaye

Contributions

G.A. and T.T. contributed significantly to the study’s conceptualization, design, and data collection; M.T. contributed significantly to the study’s data analysis and interpretation. B.T.A. contributed to the manuscript writing as well.

Corresponding author

Correspondence to Melkamu Tilahun.

Ethics declarations

Ethics approval and consent to participate

In accordance with the revised Declaration of Helsinki guidelines for human research was performed for this study. Ethical approval was obtained from the Institutional Ethical Review Board of St Paul Hospital Medical Millennium College (with the ethical approval number SPHHMC/14/01/2023 in August 2023). Tikur Anebessa Specialized Hospital and St. Paul’s Hospital Millennium Medical Colleges’ medical directors wrote a support letter for their cardiac centers (study setting). The research involved human participants but did not involve donors of tissue samples, so we obtained oral informed consent from clients, and then data were collected. Study participants had the right to refuse to join, ask any questions, or withdraw at any time. Privacy and confidentiality were assured.

Competing interests

The authors declare no competing interests.

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Awoke, G., Tilahun, M., Tsega, T. et al. Disease burden and associated factors among caregivers of children with congenital heart disease at tertiary hospitals in Addis Ababa, Ethiopia. Sci Rep (2026). https://doi.org/10.1038/s41598-026-44249-2

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