Family caregivers' experiences of providing psychospiritual care to patients undergoing hemodialysis in Indonesia: A descriptive phenomenological study
-
La Rakhmat Wabula
,
Krisna Yetti
,
Masfuri Masfuri
,
Widyatuti Widyatuti
,
Ika Yuni Widyawati
,
Cahyu Septiwi
,
Muhammad Agung Akbar
Abstract
Background & Aim: Patients undergoing long-term hemodialysis frequently experience emotional, existential, and spiritual distress that requires support beyond routine clinical care. Family caregivers are often the closest and most continuous companions throughout the treatment trajectory, yet limited evidence has examined how they experience and enact psychospiritual care in everyday hemodialysis contexts, particularly in Indonesia. This study aimed to explore family caregivers’ experiences of providing psychospiritual care to patients undergoing long-term hemodialysis.
Methods & Materials: A descriptive phenomenological study was conducted in two hemodialysis units in Indonesia. Fifteen purposively selected family caregivers of patients undergoing long-term hemodialysis participated in semi-structured in-depth interviews. Data collection continued until informational redundancy was achieved. Interview data were transcribed verbatim and analyzed using Colaizzi’s method.
Results: Three major themes were identified: (1) Enacting emotional presence as a therapeutic foundation in everyday care; (2) Facilitating spiritual meaning-making to foster inner peace and acceptance; and (3) Engaging in shared care navigation through practical support and collaborative decision-making. These findings indicate that family psychospiritual caregiving was experienced as a relational and meaning-centered process in sustaining patients’ endurance during long-term hemodialysis.
Conclusion: Family psychospiritual care in long-term hemodialysis is a sustained relational practice that integrates emotional presence, spiritual meaning-making, and shared care navigation. Hemodialysis services should recognize family caregivers as important partners in supporting patients’ emotional security, spiritual coping, treatment endurance, and gradual acceptance of illness.
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3. Ho Y-F, Chen Y-C, Li IC. A qualitative study on shared decision-making of patients with chronic kidney disease. Nursing Open. 2021;8(6): 3430-3440. doi: 10.1002/nop2.891.
4. Coumoundouros C, Farrand P, Sanderman R, von Essen L, Woodford J. “Systems seem to get in the way”: a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease. BMC Nephrology. 2024;25(1): 7. doi: 10.1186/s12882-023-03444-3.
5. Toding D, Masfuri M, Waluyo A, Yona S, Mahmud R, Nining S, et al. Exploring the experiences of the hemodialysis patients during the COVID-19 pandemic: A qualitative study. F1000Res. 2024;13: 1404. doi: 10.12688/f1000research.158482.2.
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8. Matulessy T. The vital role of nurses in alleviating anxiety in hemodialysis patients. Indonesian Journal of Health Services. 2025;2(2): 85-87. doi: 10.63202/ijhs.v2i2.105.
9. Kosmadakis G, Necoara A, Baudenon J, Deville C, Enache I, Chelaru E. The Multidimensional Impact of Expanded Hemodialysis: A Comprehensive Review. Seminars in Dialysis. 2025;38(3): 176-186. doi: 10.1111/sdi.13257.
10. Cipta DA, Andoko D, Theja A, Utama AV, Hendrik H, William DG, Reina N, Handoko MT, Lumbuun N. Culturally sensitive patient-centered healthcare: a focus on health behavior modification in low and middle-income nations—insights from Indonesia. Frontiers in Medicine. 2024 Apr 12;11:1353037. doi: 10.3389/fmed.2024.1353037.
11. Parizad N, Rahimpour M, Alinejad V, Khorami Markani A. Effect of a Spiritual Care Program on Treatment Adherence and Sleep Quality in Hemodialysis Patients: A Cluster‐Randomized Clinical Trial. Health Science Reports. 2025 Dec;8(12):e71627. doi: 10.1002/hsr2.71627.
12. Solaimanimoghaddam R, Beydokhti TB, Firouzkohi MR. Family Caregivers’ Experiences of Living with Hemodialysis Patients: A Descriptive Phenomenology. Iranian Journal of Nursing and Midwifery Research. 2024 Sep 1;29(5):535-41. doi: 10.4103/ijnmr.ijnmr_276_22.
13. Magenge AH, Ndile ML, Furia F. Family caregivers' experience of caring for patients undergoing hemodialysis: A qualitative study at Muhimbili National Hospital in Dar es Salaam, Tanzania. PLoS One. 2025;20(5): e0321732. doi: 10.1371/journal.pone.0321732.
14. Gurung S, Devkota N. Quality of life among hemodialysis patients in a referral center in Kathmandu: A mixed-method study. PLoS One. 2025;20(11): e0335990. doi: 10.1371/journal.pone.0335990.
15. Abu Bonsra E, Atsrim PY, Korankye A, Komesuor J. Experiences and coping strategies among patients with Chronic Renal Failure (CRF) in Ghana: A phenomenological study. PLOS Mental Health. 2025 Sep 19;2(9):e0000279. doi: 10.1371/journal.pmen.0000279.
16. Annisa TN, Muis N. The meaning of family medicinal plants for family health: A phenomenological study among rural housewives. Journal of Community Nursing and Primary Care. 2025;2(2): 56-64. doi: 10.63202/jcnpc.v2i2.115.
17. Aghamohammadi V, Ebadi J, Seyyedrasooli A, Aliasgarzadeh S, Ghaderi M, Khateri A, Nasiri K. Comparison of the effects of lavender oil inhalation and tea on sleep quality, fatigue, and pain in hemodialysis patients: A randomized clinical trial. Nursing Practice Today. 2025;12(2): 202-213. doi: 10.18502/npt.v12i2.18343.
18. Yu X, Nakayama M, Wu M-S, Kim Y-L, Mushahar L, Szeto CC, et al. Shared Decision-Making for a Dialysis Modality. Kidney International Reports. 2022;7(1): 15-27. doi: 10.1016/j.ekir.2021.10.019.
19. Hejazi SS, Hosseini M, Ebadi A, Alavi Majd H. Components of quality of life in hemodialysis patients from family caregivers’ perspective: A qualitative study. BMC Nephrology. 2021;22(1): 379. doi: 10.1186/s12882-021-02584-8.
20. Musa AS, Elbqowm O, AlBashtawy M, Al Qadire MI, Suliman M, Tawalbeh LI, et al. Spiritual Wellbeing and Quality of Life among Hemodialysis Patients in Jordan: A Cross-Sectional Correlational Study. Journal of Holistic Nursing. 2023;41(3): 220-232. doi: 10.1177/08980101221083422.
21. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine. 2014 Sep;89(9):1245-51. doi: 10.1097/ACM.0000000000000388.
22. Vignato J, Inman M, Patsais M, Conley V. Computer-assisted qualitative data analysis software, phenomenology, and Colaizzi’s method. Western Journal of Nursing Research. 2022 Dec;44(12):1117-23. doi: 10.1177/01939459211030335.
23. Al Muchtari TA, Syukri M, Yusni Y. Association between caregiver burden in family and hemodialysis compliance of chronic kidney disease patients in Aceh, Indonesia. Narra J. 2023;3(3): e255. doi: 10.52225/narra.v3i3.255.
24. Nimah L, Nursalam N, Wahyudi AS, Mariyanti H. Quality of Life of Family Caregivers of Patients Undergoing Dialysis: A Literature Review. Sage Open Nursing. 2024;10: 23779608241240124. doi: 10.1177/23779608241240124.
25. Boateng EA, Bisiw MB, Agyapomah R, Enyemadze I, Kyei-Dompim J, Kumi SP, Boakye DS. A qualitative study on the experiences of family caregivers of children with End-Stage Kidney Disease (ESKD). BioPsychoSocial Medicine. 2024;18(1): 17. doi: 10.1186/s13030-024-00314-8.
26. Shaabna Z, M SA, Zeilani R. Experiences and needs of family caregivers for patients with End Stage Renal Disease (ESRD) in Palestine. BMC Palliative Care. 2025;24(1): 81. doi: 10.1186/s12904-025-01722-5.
27. Bonilla Sierra P, Pérez-Jiménez JM, Espinoza Quezada DP, Lucchetti G, De-Diego-Cordero R. Association between religious/spiritual coping and quality of life among hemodialysis patients in Ecuador. Frontiers in Public Health. 2025 Apr 2;13:1510329. doi: 10.3389/fpubh.2025.1510329.
28. Wijayanti L, Septianingrum Y, Sultoni A, Fitriasari A, Wardani EM, Ramadhani L. Effectiveness of Combination Dhikr and Salawat on Anxiety and Sleep Quality in Hemodialysis Patients in Indonesia: A Randomized Controlled Trial. Journal of Religion and Health. 2025 Aug;64(4):2542-57. doi: 10.1007/s10943-025-02342-2.
29. Akbar MA, Sahar J, Rustina Y, Rekawati E. Interprofessional Collaboration in Primary Care: Concept Analysis. Journal of Caring Sciences. 2025 Oct 28;14(4):267-77. doi: 10.34172/jcs.025.33428.
30. Akbar MA, Sahar J, Rekawati E, Sartika RA, Gupta P. Analysis of Factors Related to Diabetes Self-Management in Patients with Type 2 Diabetes Mellitus in Rural Areas. Nurse Media Journal of Nursing. 2025 Apr 1;15(1):65-74. doi: 10.14710/nmjn.v15i1.62539.
2. Li Z, He R, Wang Y, Qu Z, Liu J, Yu R, Yang S. Global trends of chronic kidney disease from 1990 to 2021: A systematic analysis for the global burden of disease study 2021. BMC Nephrol. 2025;26(1): 385. doi: 10.1186/s12882-025-04309-7.
3. Ho Y-F, Chen Y-C, Li IC. A qualitative study on shared decision-making of patients with chronic kidney disease. Nursing Open. 2021;8(6): 3430-3440. doi: 10.1002/nop2.891.
4. Coumoundouros C, Farrand P, Sanderman R, von Essen L, Woodford J. “Systems seem to get in the way”: a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease. BMC Nephrology. 2024;25(1): 7. doi: 10.1186/s12882-023-03444-3.
5. Toding D, Masfuri M, Waluyo A, Yona S, Mahmud R, Nining S, et al. Exploring the experiences of the hemodialysis patients during the COVID-19 pandemic: A qualitative study. F1000Res. 2024;13: 1404. doi: 10.12688/f1000research.158482.2.
6. Pernefri. Indonesian Renal Registry 2024. Available from: https://www.indonesianrenalregistry.org/.
7. Mailani F, Huriani E, Malini H, Setiawan S, Yuni AR. Barriers and Facilitators to Haemodialysis Care in Indonesia: Perspectives of Dialysis Nurses. J Ren Care. 2026;52(1): e70044. doi: 10.1111/jorc.70044.
8. Matulessy T. The vital role of nurses in alleviating anxiety in hemodialysis patients. Indonesian Journal of Health Services. 2025;2(2): 85-87. doi: 10.63202/ijhs.v2i2.105.
9. Kosmadakis G, Necoara A, Baudenon J, Deville C, Enache I, Chelaru E. The Multidimensional Impact of Expanded Hemodialysis: A Comprehensive Review. Seminars in Dialysis. 2025;38(3): 176-186. doi: 10.1111/sdi.13257.
10. Cipta DA, Andoko D, Theja A, Utama AV, Hendrik H, William DG, Reina N, Handoko MT, Lumbuun N. Culturally sensitive patient-centered healthcare: a focus on health behavior modification in low and middle-income nations—insights from Indonesia. Frontiers in Medicine. 2024 Apr 12;11:1353037. doi: 10.3389/fmed.2024.1353037.
11. Parizad N, Rahimpour M, Alinejad V, Khorami Markani A. Effect of a Spiritual Care Program on Treatment Adherence and Sleep Quality in Hemodialysis Patients: A Cluster‐Randomized Clinical Trial. Health Science Reports. 2025 Dec;8(12):e71627. doi: 10.1002/hsr2.71627.
12. Solaimanimoghaddam R, Beydokhti TB, Firouzkohi MR. Family Caregivers’ Experiences of Living with Hemodialysis Patients: A Descriptive Phenomenology. Iranian Journal of Nursing and Midwifery Research. 2024 Sep 1;29(5):535-41. doi: 10.4103/ijnmr.ijnmr_276_22.
13. Magenge AH, Ndile ML, Furia F. Family caregivers' experience of caring for patients undergoing hemodialysis: A qualitative study at Muhimbili National Hospital in Dar es Salaam, Tanzania. PLoS One. 2025;20(5): e0321732. doi: 10.1371/journal.pone.0321732.
14. Gurung S, Devkota N. Quality of life among hemodialysis patients in a referral center in Kathmandu: A mixed-method study. PLoS One. 2025;20(11): e0335990. doi: 10.1371/journal.pone.0335990.
15. Abu Bonsra E, Atsrim PY, Korankye A, Komesuor J. Experiences and coping strategies among patients with Chronic Renal Failure (CRF) in Ghana: A phenomenological study. PLOS Mental Health. 2025 Sep 19;2(9):e0000279. doi: 10.1371/journal.pmen.0000279.
16. Annisa TN, Muis N. The meaning of family medicinal plants for family health: A phenomenological study among rural housewives. Journal of Community Nursing and Primary Care. 2025;2(2): 56-64. doi: 10.63202/jcnpc.v2i2.115.
17. Aghamohammadi V, Ebadi J, Seyyedrasooli A, Aliasgarzadeh S, Ghaderi M, Khateri A, Nasiri K. Comparison of the effects of lavender oil inhalation and tea on sleep quality, fatigue, and pain in hemodialysis patients: A randomized clinical trial. Nursing Practice Today. 2025;12(2): 202-213. doi: 10.18502/npt.v12i2.18343.
18. Yu X, Nakayama M, Wu M-S, Kim Y-L, Mushahar L, Szeto CC, et al. Shared Decision-Making for a Dialysis Modality. Kidney International Reports. 2022;7(1): 15-27. doi: 10.1016/j.ekir.2021.10.019.
19. Hejazi SS, Hosseini M, Ebadi A, Alavi Majd H. Components of quality of life in hemodialysis patients from family caregivers’ perspective: A qualitative study. BMC Nephrology. 2021;22(1): 379. doi: 10.1186/s12882-021-02584-8.
20. Musa AS, Elbqowm O, AlBashtawy M, Al Qadire MI, Suliman M, Tawalbeh LI, et al. Spiritual Wellbeing and Quality of Life among Hemodialysis Patients in Jordan: A Cross-Sectional Correlational Study. Journal of Holistic Nursing. 2023;41(3): 220-232. doi: 10.1177/08980101221083422.
21. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine. 2014 Sep;89(9):1245-51. doi: 10.1097/ACM.0000000000000388.
22. Vignato J, Inman M, Patsais M, Conley V. Computer-assisted qualitative data analysis software, phenomenology, and Colaizzi’s method. Western Journal of Nursing Research. 2022 Dec;44(12):1117-23. doi: 10.1177/01939459211030335.
23. Al Muchtari TA, Syukri M, Yusni Y. Association between caregiver burden in family and hemodialysis compliance of chronic kidney disease patients in Aceh, Indonesia. Narra J. 2023;3(3): e255. doi: 10.52225/narra.v3i3.255.
24. Nimah L, Nursalam N, Wahyudi AS, Mariyanti H. Quality of Life of Family Caregivers of Patients Undergoing Dialysis: A Literature Review. Sage Open Nursing. 2024;10: 23779608241240124. doi: 10.1177/23779608241240124.
25. Boateng EA, Bisiw MB, Agyapomah R, Enyemadze I, Kyei-Dompim J, Kumi SP, Boakye DS. A qualitative study on the experiences of family caregivers of children with End-Stage Kidney Disease (ESKD). BioPsychoSocial Medicine. 2024;18(1): 17. doi: 10.1186/s13030-024-00314-8.
26. Shaabna Z, M SA, Zeilani R. Experiences and needs of family caregivers for patients with End Stage Renal Disease (ESRD) in Palestine. BMC Palliative Care. 2025;24(1): 81. doi: 10.1186/s12904-025-01722-5.
27. Bonilla Sierra P, Pérez-Jiménez JM, Espinoza Quezada DP, Lucchetti G, De-Diego-Cordero R. Association between religious/spiritual coping and quality of life among hemodialysis patients in Ecuador. Frontiers in Public Health. 2025 Apr 2;13:1510329. doi: 10.3389/fpubh.2025.1510329.
28. Wijayanti L, Septianingrum Y, Sultoni A, Fitriasari A, Wardani EM, Ramadhani L. Effectiveness of Combination Dhikr and Salawat on Anxiety and Sleep Quality in Hemodialysis Patients in Indonesia: A Randomized Controlled Trial. Journal of Religion and Health. 2025 Aug;64(4):2542-57. doi: 10.1007/s10943-025-02342-2.
29. Akbar MA, Sahar J, Rustina Y, Rekawati E. Interprofessional Collaboration in Primary Care: Concept Analysis. Journal of Caring Sciences. 2025 Oct 28;14(4):267-77. doi: 10.34172/jcs.025.33428.
30. Akbar MA, Sahar J, Rekawati E, Sartika RA, Gupta P. Analysis of Factors Related to Diabetes Self-Management in Patients with Type 2 Diabetes Mellitus in Rural Areas. Nurse Media Journal of Nursing. 2025 Apr 1;15(1):65-74. doi: 10.14710/nmjn.v15i1.62539.
| Issue | Articles in Press | |
| Section | Original Article(s) | |
| Keywords | ||
| family caregivers hemodialysis psychospiritual care phenomenology | ||
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How to Cite
1.
Wabula LR, Yetti K, Masfuri M, Widyatuti W, Widyawati IY, Septiwi C, Akbar MA. Family caregivers’ experiences of providing psychospiritual care to patients undergoing hemodialysis in Indonesia: A descriptive phenomenological study. Nurs. pract. today. 2026;:X-X.
