Family's experience in care patients of end stage kidney disease: Scoping review

Weni Sulastri; Meira Erawati; Dewi Lestari; Novi Lasmadasari; Annisa Pratiwi; Mery Mirna Leni

doi:10.26714/mki.6.1.2023.68-75

Family's experience in care patients of end stage kidney disease: Scoping review

Weni Sulastri^(1*), Meira Erawati⁽²⁾, Dewi Lestari⁽³⁾, Novi Lasmadasari⁽⁴⁾, Annisa Pratiwi⁽⁵⁾, Mery Mirna Leni⁽⁶⁾

(1) Departmen Keperawatan, Fakultas Ilmu Kedokteran, Universitas Diponegoro
(2) Departmen Keperawatan, Fakultas Ilmu Kedokteran, Universitas Diponegoro
(3) Departmen Keperawatan, Fakultas Ilmu Kedokteran, Universitas Diponegoro
(4) Departmen Keperawatan, Fakultas Ilmu Kedokteran, Universitas Diponegoro
(5) Departmen Keperawatan, Fakultas Ilmu Kedokteran, Universitas Diponegoro
(6) Departmen Keperawatan, Fakultas Ilmu Kedokteran, Universitas Diponegoro
(*) Corresponding Author

Abstract

Patient caregivers have an important role during and after hemodialysis. caregivers experience barriers and have an impact on bio-psycho-socio-spiritual when providing care. The objective of this study is to summarise the results of several previous studies that provide an overview of the family's experience in care for patients with end-stage kidney disease. This scoping review is a search of electronic databases, Google scholar, ScienceDirect, PubMed, dan research gate. Research (Chronic kidney disease OR chronic kidney disease) AND ('caregiver/psychology' OR caregiver) AND (mental health OR support OR social OR economic OR environmental OR education OR program OR strategy OR services OR care services OR support services. Research from five articles shows that the experience of caregivers caring for patients with the end-stage renal disease over a long period of time has a bio-psycho-socio-spiritual and financial impact on caregivers. Caregivers need support from other families regarding social, physical, psychological, spiritual and economic health that must be met to continue to optimally care for family members who suffer from end-stage kidney disease.

Keywords

Caregivers; Experience; PGTA Patients; Hemodialysis

Full Text:

PDF

References

F CE. The impact of chronic kidney. Nat R`eview Nephrol 2020;16:2020.

Sousa H, Frontini R, Ribeiro O, Paúl C, Costa E, Amado L, et al. Caring for patients with end-stage renal disease during COVID-19 lockdown: What (additional) challenges to family caregivers? Scand J Caring Sci 2022;36:215–24. https://doi.org/10.1111/scs.12980.

Thurlow JS, Joshi M, Yan G, Norris KC, Agodoa LY, Yuan CM, et al. Global epidemiology of end-stage kidney disease and disparities in kidney replacement therapy. Am J Nephrol 2021;52:98–107. https://doi.org/10.1159/000514550.

Schulz R, Eden J. Families caring for an aging America. Fam Caring an Aging Am 2016:1–345. https://doi.org/10.17226/23606.

Akorfa L, Sebuah O, Power KJ, Raghu R. Jurnal Internasional Ilmu Keperawatan Afrika 2019;11.

Nkuranyabahizi M, Rajeswaran L, Ngendahayo F, Umuhire L, Shyaka JC, Dushimiyimana V, et al. Caring experiences and support needs among family caregivers of patients with End Stage Renal Disease (ESRD) in Rwanda: A descriptive qualitative study. Int J Africa Nurs Sci 2021;15:100384. https://doi.org/10.1016/j.ijans.2021.100384.

Abebe A, Arba A, Paulos K, Abera W, Sidamo T, Shiferaw S, et al. The Lived Experience of Primary Family Caregivers of Patients on Hemodialysis Treatment in Southern Ethiopia: A Phenomenological Study. Int J Nephrol Renovasc Dis 2022;15:41–52. https://doi.org/10.2147/IJNRD.S353191.

Özsu U. De-territorializing and Re-territorializing Lotus: Sovereignty and Systematicity as Dialectical Nation-Building in Early Republican Turkey. Leiden J Int Law 2009;22:29–49. https://doi.org/10.1017/S0922156508005621.

Abebe A, Arba A, Paulos K. The Lived Experience of Primary Family Caregivers of Patients on Hemodialysis Treatment in Southern Ethiopia : A Phenomenological Study 2022:41–52.

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 2017;44.

Nkuranyabahizi M, Rajeswaran L, Ngendahayo F, Umuhire L, Claude J, Dushimiyimana V, et al. International Journal of Africa Nursing Sciences Caring experiences and support needs among family caregivers of patients with End Stage Renal Disease ( ESRD ) in Rwanda : A descriptive qualitative study. Int J Africa Nurs Sci 2021;15:100384. https://doi.org/10.1016/j.ijans.2021.100384.

Ferreira P, Talson MD, Finlay J, Rossum K, Soroka K V, Mccormick M, et al. Patient , Caregiver , and Provider Perspectives on Improving Information Delivery in Hemodialysis : A Qualitative Study 2021. https://doi.org/10.1177/20543581211046078.

Oriel AA, Linson CC. Assess the Knowledge of Family Care Givers Regarding Haemodialysis. J Pharm Res Int 2021;33:100–4. https://doi.org/10.9734/jpri/2021/v33i49a33308.

Nwangwu AO. Barriers to Care , Depressive Symptoms , and Moderating Factors among Patients with ESRD 2022.

Chan KY, Yip T, Yap DYH, Sham MK, Wong YC, Lau VWK, et al. Enhanced psychosocial support for caregiver burden for patients with chronic kidney failure choosing not to be treated by dialysis or transplantation: A pilot randomized controlled trial. Am J Kidney Dis 2016;67:585–92. https://doi.org/10.1053/j.ajkd.2015.09.021.

Appiah EO, Amertil NP, Oti-boadi E, Georgina P, Hakami F. Experiences of patients with end stage renal disease prior to and during dialysis therapy at greater Accra regional hospital public health Experiences of patients with end stage renal disease prior to and during dialysis therapy at. Cogent Public Heal 2022;9. https://doi.org/10.1080/27707571.2022.2146301.

Faridah VN, Nursalam N, Agustini NLPIB, Lestari TP, Suratmi S, Juanita F, et al. Determinants of the caregiver burden of ckd patients undergoing hemodialysis. Int J Psychosoc Rehabil 2020;24:7628–34. https://doi.org/10.37200/IJPR/V24I7/PR270731.

Paschou A, Damigos D, Skapinakis P, Siamopoulos K. The Relationship between Burden and Depression in Spouses of Chronic Kidney Disease Patients. Depress Res Treat 2018;2018. https://doi.org/10.1155/2018/8694168.

Fusar-Poli P, Salazar de Pablo G, De Micheli A, Nieman DH, Correll CU, Kessing LV, et al. What is good mental health? A scoping review. Eur Neuropsychopharmacol 2020;31:33–46. https://doi.org/10.1016/j.euroneuro.2019.12.105.

Ibrahim N, Chu SY, Siau CS, Amit N, Ismail R, Abdul Gafor AH. The effects of psychosocial and economic factors on the quality of life of patients with end-stage renal disease and their caregivers in Klang Valley, Malaysia: protocol for a mixed-methods study. BMJ Open 2022;12:e059305. https://doi.org/10.1136/bmjopen-2021-059305.

Claire Mukakarangwa M, Chironda G, Nkurunziza A, Ngendahayo F, Bhengu B. Motivators and barriers of adherence to hemodialysis among patients with end stage renal disease (ESRD) in Rwanda: A qualitative study. Int J Africa Nurs Sci 2020;13:100221. https://doi.org/10.1016/j.ijans.2020.100221.

Maddalena V, O’Shea F, Barrett B. An exploration of palliative care needs of people with end-stage renal disease on dialysis: Family caregiver’s perspectives. J Palliat Care 2018;33:19–25. https://doi.org/10.1177/0825859717747340.