Document Type : Original Article
Authors
1 Student Research Committee, Qazvin University of Medical Sciences, Qazvin, Iran
2 Social Determinants of Health Research Center, Research Institute for Prevention of Non-Communicable Diseases, Qazvin University of Medical Sciences, Qazvin, Iran
Abstract
Background: Caregivers of hemodialysis patients experience several daily challenges due to the specific condition of their patients. It is necessary to study the challenges of this group to reduce the adverse effects on the caregivers and the patients. Accordingly, the present study aimed to describe the caregivers’ lived experiences of caring for hemodialysis patients.
Methods: This was a qualitative study conducted using a phenomenological approach. The participants were 21 caregivers of hemodialysis patients from three hemodialysis centers in Qazvin, Iran who were selected using purposive and snowball sampling. Data were collected through in-depth semi-structured interviews and analyzed using Colaizzi’s seven-step method.
Results: A total of 107 primary codes, 15 subcategories, 7 categories, and 3 main themes were extracted from the analysis of the interviews. The main themes included caregiver as the central pillar, fear of the foggy future, and the heavy burden of being judged by others.
Conclusion: Caring for patients with hemodialysis constantly imposes many challenges for caregivers. The managers of hospitals and hemodialysis clinics can prevent the severe consequences experienced by caregivers and patients by planning and implementing individual development training courses and effective policies to enable caregivers.
Highlights
Keywords
- Nobahar M. Changes in the lifestyle from the perspective of hemodialysis patients: content analysis. J Qual Res Health Sci. 2018;7(4):373-84. [Persian].
- Dehghani M, Rahimi B, Makhdomi K, Jebraeily M. Determining key performance indicators in dialysis management dashboard for monitoring service quality. Journal of Modern Medical Information Sciences. 2023;9(1):46-55. doi: 10.32598/ jmis.9.1.8. [Persian].
- Ashghali Farahani M, Ghane G, Sydfatemi N, Hagani H. Effect of educational program on the burden of family caregivers of hemodialysis patients. Evid Based Care J. 2016;6(1):7-18. doi: 10.22038/ebcj.2016.6703.
- Garg AX, Suri RS, Eggers P, Finkelstein FO, Greene T, Kimmel PL, et al. Patients receiving frequent hemodialysis have better health-related quality of life compared to patients receiving conventional hemodialysis. Kidney Int. 2017;91(3):746-54. doi: 10.1016/j.kint.2016.10.033.
- dos Santos Pereira B, da Silva Fernandes N, de Melo NP, Abrita R, dos Santos Grincenkov FR, da Silva Fernandes NM. Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers. Health Qual Life Outcomes. 2017;15(1):74. doi: 10.1186/s12955-017-0646-4.
- Perlick DA, Berk L, Kaczynski R, Gonzalez J, Link B, Dixon L, et al. Caregiver burden as a predictor of depression among family and friends who provide care for persons with bipolar disorder. Bipolar Disord. 2016;18(2):183-91. doi: 10.1111/ bdi.12379.
- Alnazly EK. Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis. Hemodial Int. 2016;20(1):84-93. doi: 10.1111/hdi.12318.
- Salehitali S, Ahmadi F, Hasanpour Dehkordi A, Noorian K, Fereidooni-Moghadam M, Zarea K. Progressive exhaustion: a qualitative study on the experiences of Iranian family caregivers regarding patients undergoing hemodialysis. Int J Nurs Sci. 2018;5(2):193-200. doi: 10.1016/j.ijnss.2018.01.005.
- Williams LA, Graff JC, Wicks MN, Cowan PA, White-Means S, Tolley EA. Male caregivers of persons with end stage renal disease: a qualitative study. Nephrol Nurs J. 2017;44(3):234-42.
- Sajadi SA, Ebadi A, Moradian ST. Quality of life among family caregivers of patients on hemodialysis and its relevant factors: a systematic review. Int J Community Based Nurs Midwifery. 2017;5(3):206-18.
- Torabi Chafjiri R, Navabi N, Shamsalinia A, Ghaffari F. The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. Clin Interv Aging. 2017;12:453-8. doi: 10.2147/cia.s121285.
- DePasquale N, Cabacungan A, Ephraim PL, Lewis-Boyér L, Powe NR, Boulware LE. Family members’ experiences with dialysis and kidney transplantation. Kidney Med. 2019;1(4):171-9. doi: 10.1016/j.xkme.2019.06.001.
- Donald M, Beanlands H, Straus S, Ronksley P, Tam-Tham H, Finlay J, et al. Identifying needs for self-management interventions for adults with CKD and their caregivers: a qualitative study. Am J Kidney Dis. 2019;74(4):474-82. doi: 10.1053/j.ajkd.2019.02.006.
- Salehi Tali S, Zarea K, Hasanpour Dehkordi A. Victim of situation: experience familial caregiver with hemodialysis patient. A qualitative study. J Clin Nurs Midwifery. 2018;7(2):158-69. [Persian].
- Farzi S, Farzi S, Moladoost A, Ehsani M, Shahriari M, Moieni M. Caring burden and quality of life of family caregivers in patients undergoing hemodialysis: a descriptive-analytic study. Int J Community Based Nurs Midwifery. 2019;7(2):88- 96. doi: 10.30476/ijcbnm.2019.44888.
- Gray JR, Grove SK. Burns and Grove’s the Practice of Nursing Research-E-Book: Appraisal, Synthesis, and Generation of Evidence. Elsevier Health Sciences; 2020.
- Hiedari A, Meshkinyazd A, Soodmand P. Broken personality: lived experiences of patients with psychiatric disorders on self-stigma. J Qual Res Health Sci. 2020;9(3):221-8. doi: 10.22062/jqr.2020.91515.
- Polit DF, Beck CT. Essentials of Nursing Research: Appraising Evidence for Nursing Practice. Wolters Kluwer; 2018.
- Holloway I, Galvin K. Qualitative Research in Nursing and Healthcare. Wiley; 2016.
- Grove SK, Gray JR. Understanding Nursing Research E-Book: Building an Evidence-Based Practice. Elsevier Health Sciences; 2018.
- Rabiei L, Eslami AA, Abedi H, Masoudi R, Sharifirad GR. Caring in an atmosphere of uncertainty: perspectives and experiences of caregivers of peoples undergoing haemodialysis in Iran. Scand J Caring Sci. 2016;30(3):594- 601. doi: 10.1111/scs.12283.
- Al-Wakeel JS, Bayoumi MM. Caregiver burden among peritoneal dialysis and hemodialysis family in Saudi Arabia. Kuwait Med J. 2016;48(3):197-201.
- Parlevliet JL, Buurman BM, Pannekeet MM, Boeschoten EM, ten Brinke L, Hamaker ME, et al. Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study. BMC Nephrol. 2012;13:30. doi: 10.1186/1471-2369-13-30.
- Ebadi A, Sajadi SA, Moradian ST, Akbari R. Suspended life pattern: a qualitative study on personal life among family caregivers of hemodialysis patients in Iran. Int Q Community Health Educ. 2018;38(4):225-32. doi: 10.1177/0272684x18773763.
- Axelsson L, Klang B, Lundh Hagelin C, Jacobson SH, Gleissman SA. Meanings of being a close relative of a family member treated with haemodialysis approaching end of life. J Clin Nurs. 2015;24(3-4):447-56. doi: 10.1111/jocn.12622.
- Erlingsson CL, Magnusson L, Hanson E. Family caregivers’ health in connection with providing care. Qual Health Res. 2012;22(5):640-55. doi: 10.1177/1049732311431247.
- Rajkhowa R. Experiences and difficulties faced by family caregivers of hemodialysis patients in Ranchi, Jharkhand. Int J Res Eng Sci Manag. 2019;2(2):40-2.
- Wightman A, Zimmerman CT, Neul S, Lepere K, Cedars K, Opel D. Caregiver experience in pediatric dialysis. Pediatrics. 2019;143(2):e20182102. doi: 10.1542/peds.2018-2102.
- Frontini R, Sousa H, Ribeiro Ó, Figueiredo D. “What do we fear the most?”: Exploring fears and concerns of patients, family members and dyads in end-stage renal disease. Scand J Caring Sci. 2021;35(4):1216-25. doi: 10.1111/scs.12940.
- Rezaei M, Khodabakhshi-Koolaee A, Falsafinejad MR, Sanagoo A. Identifying the psychological challenges of mothers with a chronically ill child: a phenomenological study. J Qual Res Health Sci. 2020;9(1):18-27. doi: 10.22062/ jqr.2020.90999.
- Eslami AA, Rabiei L, Shirani M, Masoudi R. Dedication in caring of hemodialysis patients: perspectives and experiences of Iranian family caregivers. Indian J Palliat Care. 2018;24(4):486-90. doi: 10.4103/ijpc.ijpc_204_17.
- Pourghaznein T, Heydari A, Manzari ZS. Iranian mothers’ experiences with children undergoing hemodialysis: a hermeneutic phenomenological study. J Pediatr Nurs. 2018;42:e19-25. doi: 10.1016/j.pedn.2018.06.006.
- Khorsandi F, Parizad N, Feizi A, Hemmati Maslakpak M. How do parents deal with their children’s chronic kidney disease? A qualitative study for identifying factors related to parent’s adaptation. BMC Nephrol. 2020;21(1):509. doi: 10.1186/ s12882-020-02170-4.
- Oyegbile YO, Brysiewicz P. Exploring caregiver burden experienced by family caregivers of patients with end-stage renal disease in Nigeria. Int J Afr Nurs Sci. 2017;7:136-43. doi: 10.1016/j.ijans.2017.11.005.
- Matthews M, Reid J, McKeaveney C, Mullan R, Bolton S, Hill C, et al. Development of a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis. BMC Nephrol. 2020;21(1):421. doi: 10.1186/s12882-020-02075-2.
)