Family Caregivers’ Well-Being and Challenges in Caring for Patients Undergoing Hemodialysis
Haide B. Aligado
Discipline: health sciences (non-specific)
Abstract:
Research studies related to health care have always been centered
towards hospitals, nurses, and even doctors. In the case of the
increasing number of Filipinos undergoing hemodialysis, it includes
family members who assume proactive roles as caregivers. Family
caregivers have special health needs too, that are often taken for
granted. Many have considered caregiving as stressful, expressed in
the form of familial tensions and pressure, which is inevitably
experienced owing to the imbalances between the caregiving
responsibility and actual capability. The study was focused on fifty (50)
family caregivers of patients undergoing hemodialysis who are
considered as hidden patients. The study specifically sought to answer
questions about the level of self-concept, motivation, and altruistic
behavior of the family caregivers while caring for a family member
undergoing hemodialysis. Also, on the challenges encountered by the
caregivers in caring for a family member undergoing hemodialysis. It
utilized the quantitative and qualitative approach which determined
the level of well–being among caregivers in terms of: self-concept,
motivation, and altruism. Moreover, it aimed at identifying the
encountered challenges of the family caregivers who are taking care of
hemodialysis patients. The family caregivers’ level of self-concept and
altruism were determined as high, while motivation as fair. Challenges
encountered by family caregivers were specifically related to self-deprivation, time constraints, emotional and physical stress, financial
constraints, lack of family support, and social isolation. It is important
for other family members to share responsibility and provide full
support to meet the family caregivers’ personal needs. Health
administrators and hospital policymakers must consider developing a
unit for psychological and emotional debriefing, and help family
caregivers be aware of their roles, and their personal needs must be
balanced.
References:
- Abd Elhafeez, S., Bolignano, D., D’Arrigo, G., Dounousi, E., Tripepi, G. & Zoccali, C. (2018). Prevalence and burden of chronic kidney disease among the general population and high-risk groups in Africa: a systematic review BMJ Open, 8(1):4- 27 e015069. https://doi.org/10.1136/bmjopen2016-015069
- Abd Rabouh, M. (2017). Relationship between fatigue and functional status of the elderly patients on Hemodialysis. Unpublished Master thesis. Faculty of Nursing, Mansura University
- Abebe, A., Arba, A., Paulos, K., Abera, W., Sidamo, T., Shiferaw, S., ... & Woldeyohannes, S. (2022). The Lived Experience of Primary Family Caregivers of Patients on Hemodialysis Treatment in Southern Ethiopia: A Phenomenological Study. International Journal of Nephrology and Renovascular Disease, 41-52.
- Akbari M, Alavi M, Maghsoudi J, Irajpour A, Lopez V, Cleary M. (2019). Mastering the Art of Collaboration: Supporting Family Caregivers of Mental Health Patients by Service Providers in Iran. Adm Policy Ment Health. https://doi.org/10.1007/s10488-018-0893-7. [PubMed] [Google Scholar]
- Amini R, Barkhordar A, Sadeqi A, Tapak L. (2020). [The effect of family-centered care education on the knowledge of caregivers of patients in the burn ward of Besat Hospital in Hamadan, 2019]. Nurs Midw J. 2020;17(12):985-94.
- Persian Armstrong, M. J., Alliance, S., Taylor, A., Corsentino, P., and Galvin, J. E. (2019). End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers. PLoS One 14: e0217039. https://doi.org/10.1371/journal.pone.0217039
- Bikbov, B., Purcell, CA., Levey, AS., et al. (2020). Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2020;395(10225):709–733. https://doi.org/10.1016/S0140-6736(20)30045-3
- Cagan, O., Unsal, A., Celik, N., Yilmaz, A., Culha, I. &Eren, H. (2018) Care Burden of Caregivers of Hemodialysis Patients and Related Factors. International Journal of Caring Sciences, 11 (1): 380-283)
- Centers for Disease Control Prevention. Chronic kidney disease in the United States, 2019. Atlanta, Georgia: Centers for Disease Control and Prevention; 2019. Available from: https://www.cdc.gov/kidneydisease/publications-resources/CKD-national-facts.html.
- Chen, Y., Peng, Y., Xu, H., & O’Brien, W. (2018). Age Differences in Stress and Coping: Problem Focused Strategies Mediate the Relationship between Age and Positive Affect. The International Journal of Aging and Human Development, 86(4) 347–363
- Chhetri, S. K., & Baral, R. (2020). Caregiver burden among caregivers of patient undergoing hemodialysis in tertiary care center: a descriptive cross-sectional study. JNMA: Journal of the Nepal Medical Association, 58(223), 148.
- Dombestein, H., Norheim, A., & Lunde Husebø, A. M. (2020). Understanding informal caregivers’ motivation from the perspective of self‐determination theory: An integrative review. Scandinavian journal of caring sciences, 34(2), 267-279.
- Fadlalmola HA, Elkareem EMA. (2020). Impact of an educational program on knowledge and quality of life among hemodialysis patients in Khartoum state. Int J Afr Nurs Sci. 2020; 12:100205. https://doi.org/10.1016/j.ijans..100205.
- Flores, S., (2023). Challenges Affecting Family Caregivers. https://caregiver.com/articles/challenges-affecting-caregivers/.
- Gelberg-Goff, L., (2021). Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm was named the Best Caregiving Book.
- Hasanah, U., Ayubbana, S., & Supardi, S. (2020). The Quality of Life for Family Caregivers in Caring Family Members Undergoing Hemodialysis. Proceedings of the International Conference on Nursing and Health Sciences, 1(1), 35-40. Retrieved from https://jurnal.globalhealthsciencegroup.com/index.php/PICNHS/article/view/272
- Haverstock, N. B., Ruthig, J. C., & G. Chipperfield, J. (2020). Primary and secondary control strategies and psychological well-being among familial caregivers of older adults with dementia. The Journal of Social Psychology, 160(1), 61–74. https://doi.org/10.1080/00224545.2019.1592095
- Khiali Z, Khani M, & Dehghan A. (2018). Survey of Caregiver Burden, and its related factors in Caregiver of hemodialysis patients referring to Shahid Mohammadi Hospital in Bandar Abbas, 2016. Nurs Vulner J. 2018;5(16):35-46.
- Kusi, G., Boamah Mensah, A. B., Boamah Mensah, K., Dzomeku, V. M., Apiribu, F., & Duodu, P. A. (2020) Ghanaian context on socio-cultural values: Motives & Self – Determination.
- Livana PH, Dona Yanuar Agus Santoso, Sri Mulyani, Uswatun Hasanah. (2023). Student Stress Levels in Preparing Thesis, Indonesian Journal of Global Health Research: Vol 5 No 3 (2023): Indonesian Journal of Global Health Research; August 2023.
- Megan C, Thomas T, Hebdon H, Cuong A, Phan C (2022). Journal of Hospice and Palliative Nursing; Volume 3 No 5 (2022): Spanish Journal of Global Health Research; July 2022.
- Neill, M. C., Badovinac, S., Pillai Riddell, R., Bureau, J. F., Rumeo, C., & Costa, S. (2021). The longitudinal and concurrent relationship between caregiver sensitivity and preschool attachment: A systematic review and meta-analysis. PloS one, 16(1), e0245061.
- Owoo, B., Ninnoni, J. P. K., Ampofo, E. A., & Seidu, A. A. (2022). “I always find myself very tired and exhausted”: The physical impact of caring; a descriptive phenomenological study of the experiences of prostate cancer caregivers in Cape Coast, Ghana. Plos one, 17(7), e0268627.
- Oyegbile, Y. & Brysiewicz, P. (2017). Exploring caregiver burden experienced by family caregivers of patients with End-Stage Renal Disease in Nigeria. International Journal of Africa Nursing Sciences, 7: 136–143
- Pappa S, Ntella V, Giannakas T, Giannakoulis VG, Papoutsi E, Katsaounou P. (2020) Prevalence of depression, anxiety, and insomnia among healthcare workers: A systematic review and meta-analysis. Brain, Behavior, and Immunity. 2020; 88:901–907. https://doi.org/10.1016/j.bbi.2020.05.026. Epub 2020 May 8. Erratum in: Brain Behav Immun. 2021 Feb; 92:247. PMID: 32437915; PMCID: PMC7206431
- Pinquart, M. (2018). Parenting stress in caregivers of children with chronic physical condition—A meta‐analysis. Stress and Health, 34(2), 197-207.
- Rabiei, L., Eslami, A. A., Abbasi, M., Afzali, S. M., Hosseini, S. M., & Masoudi, R. (2020). Evaluating the effect of family-centered intervention program on care burden and self-efficacy of hemodialysis patient caregivers based on social cognitive theory: a randomized clinical trial study. Korean Journal of Family Medicine, 41(2), 84.
- Rafati, F., Mashayekhi, F., & Dastyar, N. (2020). Caregiver burden and spiritual well-being in caregivers of hemodialysis patients. Journal of religion and health, 59(6), 3084-3096.
- Redlands Community Hospital (2019). Jean Watson’s Theory of Human Caring. Redlands Community Hospital. https://www.redlandshospital.org/nursing-excellence/jean-watsons-theory-of-human-caring/
- Rodríguez-Pérez, M., Abreu-Sánchez, A., Rojas-Ocaña, M. J., & del-Pino Casado, R. (2017). Coping strategies and quality of life in caregivers of dependent elderly relatives. Health and Quality of Life Outcomes, 15, 71. http://doi.org/10.1186/s12955-017- 0634-8
- Salama, L., Elkafrawy, l., Hassan, E., Mohammed, K., Emad, E., Soad, H., and Elhameed, A. (2019). Caregiving Burden and Coping Strategies of Caregivers Caring for Elderly With End Stage Renal Disease. Gerontological Nursing -Faculty of Nursing - Mansoura University, Egypt Mansoura Nursing Journal (MNJ) vol.6. No.2 – 2019
- Salehi-tali S., Ahmadi F., Zarea K., Fereidooni-Moghadam M. (2019). Commitment to care: the most important coping strategies among family caregivers of patients undergoing hemodialysis. Scand J Caring Sci. May 19 in press. [PubMed] [Google Scholar]
- Sim M. Y., An S. A. (2018). A Study on the influences of family stress on family adaptation of disabled families. Journal of Rehabilitation Research. 2013;17(3):135–157.
- Sotoudeh, R., Pahlavanzadeh, S., and Mousa, A., (2019} The Effect of a Family-Based Training Program on the Care Burden of Family Caregivers of Patients Undergoing Hemodialysis. Iran J Nurs Midwifery Res. 2019 Mar-Apr; 24(2): 144–150. https://doi.org/10.4103/ijnmr.IJNMR_93_18..https://pubmed.ncbi.nlm.nih.gov/?term=Pahlavanzadeh%20S%5BAuthor%5D
- Stage Renal Disease. Gerontological Nursing -Faculty of Nursing – Mansoura University, Egypt Mansoura Nursing Journal (MNJ) vol.6. No.2 – 2019
- Supangphorn, P., & Bomrungwong, A. (2023). Self-concept of Family Caregivers of Palliative Patients: A scoping review. วารสาร ศูนย์ อนามัย ที่ 9: วารสาร ส่งเสริม สุขภาพ และ อนามัย สิ่งแวดล้อม, 17(3), 1035-1049.
- Tadesse, H., Gutema, H., Wasihun, Y., et al. (2021). Lived experiences of patients with chronic kidney disease receiving hemodialysis in Felege Hiwot comprehensive specialized hospital, Northwest Ethiopia. Int J Nephrol. 2021; 2021:6637272. https://doi.org/10.1155/2021/6637272
- Tacio, H. (2018). The rise of Kidney Problems and Challenges of Patient and Caregivers study. https://businessmirror.com.ph/2018/07/07therise-of-kidney-problems&challenges-of-patients&caregiver.
- Tavakoli N, Momeni M K, Sarani H, Bouya S, Imani J A R, et al. (2022). Effectiveness of Family-Centered Care Education in Care Knowledge of Caregivers of Hemodialysis Patients. Med Surg Nurs J.;11(1):e130292. https://doi.org/10.5812/msnj-130292.
- Torres, G. C. S., Sumile, E. F. R., Rebueno, M. C. D., Parial, L. L. B., Malong‐Consolacion, C. P., Estrada, M. G., ... & Hendrix, C. C. (2021, October). Exploring the challenges and needs of home caregivers of hemodialysis patients in the Philippines: A mixed methods study. In Nursing Forum (Vol. 56, No. 4, pp. 823-833).
- Turcotte, M. (2021). Family Caregiving: What are the Consequences? [(accessed on10February2021)].Availableonline: https://www150.statcan.gc.ca/n1/pub/75-006-x/2013001/article/11858-eng.html
- Uswatun, H. Senja, A. Sari HS, Nury, L. Fitri, L. (2024). Livana PH, Palliative Community Health Nursing (PCHN) on Improving Family Independence in The Care of Stroke Patients, Indonesian Journal of Global Health Research: Vol 6 No 2 (2024): Indonesian Journal of Global Health Research; April 2024.
- Valiollahi Bishe M, Aziznejadroshan P, Haghshenas Mojaveri M, Haji Ahmadi M, Jaafaritabar Bishe R. (2020). The Effect of Home-visit Training Program on the Anxiety of Patients: A Clinical Trial Study. Int.;8(8):11783-91. https://doi.org/10.22038/ijp. 44964.3705
- Weatherburn C.J., Heath C.A., Mercer S.W., Guthrie B. (2019) Physical and mental health comorbidities of epilepsy: population-based cross-sectional analysis of 1.5 million people in Scotland. Seizure. Feb 23; 45:125–131. [PubMed] [Google Scholar]
- Wing EJ, Schiffman FJ. Cecil Essentials of Medicine E-Textbook. Elsevier Health Sciences; 2021.
- Zareiyan A, Abedini F, Alhani F. (2020). The effects of the family-centered empowerment model on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valves: A controlled clinical trial. Nurse Midwife Stud.;9(2):61. https://doi.org/10.4103/nms.nms4518
ISSN 2719-0692 (Online)
ISSN 2704-419X (Print)