Journal of Health Literacy

Journal of Health Literacy

Health Literacy Challenges and Caregiving Burden among Family Caregivers of Hemodialysis Patients: A Qualitative Study from Nurses' Perspectives in Indonesia

Articles in Press

Document Type : Original Article

Authors
Lailatun Nimah 1
Herdina Mariyanti 1
Noor Hanita Zaini 2
1 Medical-Surgical Nursing, Faculty of Nursing, Universitas Airlangga, Surabaya, Indonesia.
2 Faculty of Nursing, Universiti Malaya, Kuala Lumpur, Malaysia.
10.22038/jhl.2026.96630.2003
Abstract
Background and Objectives: Hemodialysis patients rely heavily on their family caregivers for daily care management. However, the complexity of care often presents challenges in health literacy and care burden, which can impact the quality of care. Nurses' perspectives are crucial for understanding the unmet needs of family caregivers. This study aims to explore the health literacy challenges, psychosocial burden, and support needs of family caregivers of hemodialysis patients from the perspectives of hemodialysis nurses.

Materials and Methods: This study used a conventional qualitative content analysis study with Graneheim and Lundman's methodology approach. It was conducted in the hemodialysis unit of a private hospital in Surabaya, East Java, Indonesia, in July 2025. Purposive sampling with fifteen hemodialysis nurses as participants. The Focus Group Discussions conducted for data collection lasted an averaged of 60-80 minutes and utilized open-ended, semi-structured questions.

Results: Content analysis of 26 codes resulted in three main categories that included 8 subcategories: 1) Barriers to health literacy in family caregiving for hemodialysis patients; 2) Managing emotional strain and psychosocial challenges in family caregiving; 3) The need for comprehensive support systems to strengthen caregiving capacity.

Conclusion: From the perspective of hemodialysis nurses, family caregivers of hemodialysis patients face various challenges, including non-compliance with diet and fluid restrictions, limited health literacy regarding symptoms, dietary knowledge, confusion about information, and barriers to education. Family caregivers experience fatigue, helplessness, and need emotional support and resilience. Family caregivers of hemodialysis patients also experience problems with social support from peers, family, and economic resources.
Keywords
Chronic Disease
Health Literacy
Hemodialysis
Non-Communicable Disease
Nurse Perspective

Acknowledgements: We would like to express our sincere gratitude to Universitas Airlangga for providing research funding through the Airlangga Research Fund (ARF) Batch 2 Program 2025, under Research Contract number 2997/B/UN3.LPPM/PT.01.03/2025.


Availability of data and Materials: All data supporting the findings of this studyare included in the article.


Conflicts of interest: The authors state that there are no conflicts of interest related to the present study.


Consent for publication: Not applicable.


Ethics approval and consent to participate: This study was conducted in accordance with the principles of the Declaration of Helsinki and ethical approval for this study was obtained from the Hospital Ethics Committee at the study site (Approval No.025/KEPK/RSPS-2024).


Funding: This study was funded by the Airlangga Research Fund (ARF) Batch 2 Program 2025 under Research Contract No.2997/B/UN3.LPPM/PT.01.03/2025.


Authors’ contributions: Research concept and design: Lailatun Nimah. Data collection: Lailatun Nimah and Herdina Mariyanti. Data analysis and interpretation: Noor Hanita Zaini. Manuscript preparation and review: Herdina Mariyanti and Noor Hanita Zaini. All authors reviewed and approved the final manuscript.

 

Open Access Policy: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/

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Journal of Health Literacy

Articles in Press, Accepted Manuscript
Available Online from 14 November 2026