PALLIATIVE CARE NEEDS OF PATIENTS ON MAINTENANCE HEMODIALYSIS AT THIKA LEVEL 5 HOSPITAL, KIAMBU COUNTY, KENYA
Abstract
Globally, a huge gap exists between the required and the available renal palliative care services. The gap is particularly worse in low-and-medium income countries despite having the highest percentage of patients requiring palliative care. Maintenance hemodialysis patients contribute a sizable percentage of the global renal patient population in need of palliative care. Successful provision of adequate palliative care services requires a holistic understanding of the patients’ needs. The purpose of this study was to explore the palliative care needs of patients on maintenance hemodialysis at Thika Level 5 Hospital. A qualitative descriptive design was used to explore the palliative care needs of the patients at the institution. Purposive sampling was used to recruit participants. Data collection was conducted for a period of one month at the hospital’s renal unit. A total of twelve maintenance hemodialysis patients participated in the study. Audiotaped semi-structured interviews were used to conduct data collection. Thematic analysis was used to analyze the data. The study findings showed that maintenance hemodialysis patients have many palliative care needs. The needs regard to physical, psychological and social aspects. Distressing physical symptoms were identified as the primary physical needs where fatigue, skin changes and fluctuations in appetite were reported as the most prominent symptoms. Difficult thoughts related to uncertainty about the future, caregiver burden, inability to get more children, stress and worry as well negative self-image were reported as the psychological needs experienced by the patients. Interruption of social roles, abandonment by friends and financial burden on the family were revealed as the social needs of the patients. To deal with their illness and treatment related challenges, the patients primarily utilized spiritual coping where prayers were reported to be the most utilized coping method. Lack of knowledge on palliative care and fear of being judged were identified as patient related barriers to meeting palliative care needs of the patients. Understanding the palliative care needs of maintenance hemodialysis patients has important implications on practice and policy making. Findings could be used in developing renal palliative care services provision policies and protocols to use as a guide in the identification and provision of palliative care to maintenance hemodialysis patients. Also, nephrology nurses and other renal care team healthcare professionals could use the findings to develop strategies of addressing patient related barriers to meeting palliative care needs. For research, studies could be done to evaluate the influence and perspective of healthcare providers in the provision of palliative care to maintenance hemodialysis.
References
Bagasha, P., Leng, M., Katabira, E., & Petrova, M. (2020). Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study. BMC nephrology, 21(1), 1-13. DOI: 10.1186/s12882-020-02197-7
Bates, M. J., Chitani, A., & Dreyer, G. (2017). Palliative care needs of patients living with end-stage kidney disease not treated with renal replacement therapy: an exploratory qualitative study from Blantyre, Malawi. African Journal of Primary Health Care and Family Medicine, 9(1), 1-6. DOI: 10.4102/phcfm.v9i1.1376
Boje, J., Madsen, J. K., & Finderup, J. (2021). Palliative care needs experienced by Danish patients with end‐stage kidney disease. Journal of Renal Care, 47(3), 169-183. DOI: 10.1111/jorc.12347
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. DOI: https://doi.org/10.1191/1478088706qp063oa
Davison, S. N., Levin, A., Moss, A. H., Jha, V., Brown, E. A., Brennan, F., ... & Obrador, G. T. (2015). Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care. Kidney international, 88(3), 447-459. DOI: https://doi.org/10.1038/ki.2015.110
de Barbieri, I., Strini, V., Noble, H., Amatori, S., & Sisti, D. (2022). Nurse‐perceived facilitators and barriers to palliative care in patients with kidney disease: A European Delphi survey. Journal of renal care, 48(1), 49-59. DOI: 10.1111/jorc.12371
de Jong, R. W., Stel, V. S., Heaf, J. G., Murphy, M., Massy, Z. A., & Jager, K. J. (2021). Non-medical barriers reported by nephrologists when providing renal replacement therapy or comprehensive conservative management to end-stage kidney disease patients: a systematic review. Nephrology Dialysis Transplantation, 36(5), 848-862. DOI: https://doi.org/10.1093/ndt/gfz271
Eneanya, N. D., Paasche-Orlow, M. K., & Volandes, A. (2017). Palliative and end-of-life care in nephrology: moving from observations to interventions. Current opinion in nephrology and hypertension, 26(4), 327-334. DOI: 10.1097/MNH.0000000000000337
Gelfand, S. L., Scherer, J. S., & Koncicki, H. M. (2020). Kidney supportive care: core curriculum 2020. American Journal of Kidney Diseases, 75(5), 793-806. DOI: 10.1053/j.ajkd.2019.10.016
Gilbertson, E. L., Krishnasamy, R., Foote, C., Kennard, A. L., Jardine, M. J., & Gray, N. A. (2019). Burden of care and quality of life among caregivers for adults receiving maintenance dialysis: a systematic review. American Journal of Kidney Diseases, 73(3), 332-343. DOI: 10.1053/j.ajkd.2018.09.006
Grubbs, V. (2018). Meeting the palliative care needs of maintenance hemodialysis patients: beyond the math. Clinical Journal of the American Society of Nephrology, 13(8), 1138-1139. DOI: 10.2215/CJN.07390618
Henoch, I., & Österlind, J. (2019). Development of the 6S Dialogue Tool to facilitate person‐centred palliative care. Journal of advanced nursing, 75(11), 3138-3146. DOI: https://doi.org/10.1111/jan.14115
Hum, A., Yap, C. W., & Koh, M. Y. H. (2021). End-stage organ disease–Healthcare utilisation: Impact of palliative medicine. BMJ Supportive & Palliative Care. DOI: 10.1136/bmjspcare-2021-003288
Imamah, N. F., & Lin, H. R. (2021). Palliative care in patients with end- stage renal disease: A meta synthesis. International Journal of Environmental Research and Public Health, 18(20), 10651. DOI: https://doi.org/10.3390/ijerph182010651
Kabinga, S. K., Kayima, J. K., McLigeyo, S. O., & Ndungu, J. N. (2019). Hemodialysis vascular accesses in patients on chronic hemodialysis at the Kenyatta National Hospital in Kenya. The journal of vascular access, 20(6), 697-700. DOI: 10.1177/1129729819845571
Kenya Hospice and Palliative Care Association (2020). Annual Report. https://kehpca.org/wp-content/uploads/2020/05/Annual-Report-2020-Final-2.pdf
Lam, D. Y., Scherer, J. S., Brown, M., Grubbs, V., & Schell, J. O. (2019). A conceptual framework of palliative care across the continuum of advanced kidney disease. Clinical Journal of the American Society of Nephrology, 14(4), 635-641. DOI: 10.2215/CJN.09330818
Metzger, M., Yoder, J., Fitzgibbon, K., Blackhall, L., & Abdel-Rahman, E. (2021). Nephrology and palliative care collaboration in the care of patients with advanced kidney disease: Results of a clinician Survey. Kidney Medicine, 3(3), 368-377. DOI: 10.1016/j.xkme.2021.01.008
Ministry of Health. (2021). Kenya palliative care policy 2021-2030. https://www.health.go.ke/wp-content/uploads/2021/10/Kenya-Palliative-Care-Policy-2021-2030.pdf
Mwenda, V., Githuku, J., Gathecha, G., Wambugu, B. M., Roka, Z. G., & Ong'or, W. O. (2019). Prevalence and factors associated with chronic kidney disease among medical inpatients at the Kenyatta National Hospital, Kenya, 2018: a cross-sectional study. The Pan African Medical Journal, 33. DOI: 10.11604/pamj.2019.33.321.18114
Österlind, J., & Henoch, I. (2021). The 6S‐model for person‐centred palliative care: A theoretical framework. Nursing Philosophy, 22(2). DOI: https://doi.org/10.1111/nup.12334
Otieno, F. C., Ogola, E. N., Kimando, M. W., & Mutai, K. (2020). The burden of unrecognised chronic kidney disease in patients with type 2 diabetes at a county hospital clinic in Kenya: implications to care and need for screening. BMC nephrology, 21(1), 1-11. DOI: 10.1186/s12882-020-1705-3
Sadeghian, J., Roudsari, D. M., Seyedfatemi, N., & Rafiei, H. (2016). Body-image disturbance: A comparative study among haemodialysis and kidney transplant patients. Journal of Clinical and Diagnostic Research: JCDR, 10(5), OC14. DOI: 10.7860/JCDR/2016/15699.7733
Sarfo-Walters, C., & Boateng, E. A. (2020). Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study. BMC palliative care, 19(1), 1-8. DOI: 10.1186/s12904-020-00640-y
Schell, J. O., & Johnson, D. S. (2021). Challenges with providing hospice care for patients undergoing long-term dialysis. Clinical Journal of the American Society of Nephrology, 16(3), 473-475. DOI: 10.2215/CJN.10710720
Sturgill, D., & Bear, A. (2019). Unique palliative care needs of patients with advanced chronic kidney disease–the scope of the problem and several solutions. Clinical Medicine, 19(1), 26. DOI: 10.7861/clinmedicine.19-1-26
Suriyong, P., Ruengorn, C., Shayakul, C., Anantachoti, P., & Kanjanarat, P. (2022). Prevalence of chronic kidney disease stages 3–5 in low-and middle-income countries in Asia: A systematic review and meta-analysis. PloS one, 17(2), e0264393. DOI: 10.1371/journal.pone.0264393
Tavares, A. P. D. S., Santos, C. G. D. S., Tzanno-Martins, C., Barros, J., Silva, A. M. M. D., Lotaif, L., & Souza, J. V. L. (2020). Kidney supportive care: an update of the current state of the art of palliative care in CKD patients. Brazilian Journal of Nephrology, 43, 74-87. DOI: 10.1590/2175-8239-JBN-2020-0017
Thurlow, J. S., Joshi, M., Yan, G., Norris, K. C., Agodoa, L. Y., Yuan, C. M., & Nee, R. (2021). Global epidemiology of end-stage kidney disease and disparities in kidney replacement therapy. American journal of nephrology, 52(2), 98-107. DOI: 10.1159/000514550
United States Renal Data System. (2020). Kidney disease statistics for the United States: Fast facts on kidney disease. https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease
Vasileiou, K., Barnett, J., Thorpe, S., & Young, T. (2018). Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC medical research methodology, 18(1), 1-18. DOI: https://doi.org/10.1186/s12874-018-0594-7
Wearne, N., Davidson, B., Mc Culloch, M., & Krause, R. (2021). Radically rethinking renal supportive and palliative Care in South Africa. Kidney International Reports, 6(3), 568-573. DOI: https://doi.org/10.1016/j.ekir.2020.11.024
Wen, Y., Jiang, C., Koncicki, H. M., Horowitz, C. R., Cooper, R. S., Saha, A., ... & Chan, L. (2019). Trends and racial disparities of palliative care use among hospitalized patients with ESKD on dialysis. Journal of the American Society of Nephrology, 30(9), 1687-1696. DOI: 10.1681/ASN.2018121256