“We’re not There yet”: Exploring Contextual Factors Shaping Canadian Dialysis Nurses’ Engagement in Kidney Supportive Care
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Abstract
Abstract: Treatment for kidney failure, such as dialysis, can result in a tremendously high physical and psychosocial symptom burden on patients and their families. Kidney supportive care (KSC), including advance care planning, involves early identification and treatment of symptoms that improve the quality of life for people receiving dialysis. The delay or lack of engagement in KSC by dialysis nurses until the end of life may result in people dying without receiving optimal palliative care services. Purpose and Questions: Our overarching purpose is to develop a theory about the process of engagement in KSC by dialysis nurses, and this paper is about a sub-question: What are the personal, professional, organizational, and environmental factors that shape nurses’ attitudes/beliefs toward and knowledge of supportive care in dialysis? Methods: We followed Charmaz’s constructivist grounded theory method. Through initial purposeful and subsequent theoretical sampling, 23 nurses with work experience in outpatient hemodialysis, home hemodialysis, and peritoneal dialysis settings from across Canada were recruited to participate in two interviews, each using the Zoom© teleconferencing platform. Concurrent data collection and analysis were undertaken. Results: Findings at the focused coding stage comprise contextual factors impacting such engagement. The core category of Fragmenting Care is explained by four categories of contextual factors and their related concepts and sub-concepts: (1) structural (lack of dedicated time, language barrier, knowledge gap); (2) inter-relational (patient-related factors; nurse-related factors [discomfort with having the conversation, lack of self-confidence, multi-dimensional tensions—them versus us]); (3) cultural-dialysis (biomedical focus, ambiguous responsibility, inopportune conversations); and (4) systemic (lack of conceptual clarity). Implications: These collective factors have not been illuminated previously, and while challenging, they help to better understand and therefore address engagement in KSC by dialysis nurses. Conclusion: Effecting change to normalize KSC is a priority requiring solutions compatible with complex systems.
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Aasen, E. M., Kvangarsnes, M., & Heggen, K. (2012). Nurses’ perceptions of patient participation in hemodialysis treatment. Nursing Ethics, 19(3), 419-430. https://doi.org/10.1177/0969733011429015
Axelsson, L., Benzein, E., Lindberg, J., & Persson, C. (2019). End-of-life and palliative care of patients on maintenance hemodialysis treatment: A focus group study. BMC Palliative Care, 18(89), 1-10. https://doi.org/10.1186/s12904-019-0481-y
Axelsson, L., Benzein, E., Lindberg, J., & Persson, C. (2020). Processes toward the end of life and dialysis withdrawal – Physicians’ and nurses’ perspectives. Nursing Ethics, 27(2), 419-432. https://doi.org/10.1177/0969733019848050
Bello, A. K., Ronksley, P. E., Tangri, N., Kurzawa, J., Osman, M. A., Singer, A., Grill, A. Nitsch, D., Queenan, J. A., Wick, J., Lindeman, C., Soos, B., Tuot, D. S., Shojai, S., Brimble, S., Mangin, D, & Drummond, N. (2019). Prevalence and demographics of CKD in Canadian primary care practices: A cross-sectional study. Kidney International Reports, 4, 561-570. https://doi.org/10.1016/j.ekir.2019.01.005
Benzies, K. M., & Allen, M. N. (2001). Symbolic interactionism as a theoretical perspective for multiple research method research. Journal of Advanced Nursing, 33(4), 541-547. https://doi.org/10.1046/j.1365-2648.2001.01680.x
Berzoff, J., Swantkowski, J., & Cohen, L. M. (2008). Developing a renal supportive care team from the voices of patients, families, and palliative care staff. Palliative and Supportive Care, 6, 133-139. https://doi.org.10.1017/S1478951508000217
Bikbov, B., Purcell, C. A., Levey, A. S., Smith, M., Abdoli, A., Adebe, M., Adebayo, O. M., Afarideh, M., Agarwal, S. K., Agudelo Botero, M., Ahmadian, E., Al-Aly, Z., Alipour, V., Almasi-Hashiani, A., Al-Raddadi, R., Alvis-guzman, N., Amini. S., Andrei, T., Andrei, C. L., Andualem, Z., for the GBD Chronic Kidney Disease Collaboration. (2020). Global, regional, and national burden of chronic kidney disease, 1990-2017: A systematic analysis for the Global Burden of Disease Study 2017. The Lancet, 395(10225), 709-733. https://doi.org/10.1016/S0140-6736(20)30045-3
Birks, M., & Mills, J. (2011). Grounded theory: A practical guide. SAGE.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. SAGE.
Charmaz, K. (2009). Shifting the grounds: Grounded theory in the 21st century. In J. Morse, P. Stern, J. Corbin, B. Bowers, K. Charmaz, and A. Clarke (Eds.), Developing grounded theory: The second generation (pp. 127-154). Left Coast Press.
Charmaz, K. (2014). Constructing grounded theory (2nd ed.). SAGE.
Charmaz, K. (2015). Grounded theory. In J. A. Smith (Ed.), Qualitative psychology – A practical guide to research methods (3rd ed.) (pp. 53-84). SAGE.
Davison, S. N. (2002). Quality end-of-life care in dialysis units. Seminars in Dialysis, 15(1), 41-44. https://doi.org/10.1046/j.1525 139x.2002.00015.x
Davison, S. N. (2021). Kidney palliative care: Principles, benefits, and core components. UpToDate. Retrieved July 7, 2021 from https://www.uptodate.com/contents/kidney-palliative-care-principles-benefits-and-core-components?search=kidney%20supportive%20care&source=search_result&selectedTitle=2~150&usage_type=default&display_rank=2
Davison, S. N., & Moss, A. H. (2016). Supportive care: Meeting the needs of patients with advanced chronic kidney disease. Clinical Journal of the American Society of Nephrology, 11(10), 1879-1880. https://doi.org.10.2215/CJN.06800616
Davison, S. N., Levin, A., Moss, A. H., Jha, V., Brown, E. A., Brennan, F., Murtagh, F. E., Naicker, S., Germain, M. J., O'Donoghue, D. J., Morton, R. L., Obrador, G. T., & Kidney Disease: Improving Global Outcomes (KDIGO). (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), 447-59. https://doi.org/10.1038/ki.2015.110
de Barbieri, I., Strini, V., Noble, H., Amatori, S., & Sisti, D. (2021). 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. https://doi.org/10.1111/jorc.12371
Diamond, L. H., Armistead, N. C., Lupu, D. E., & Moss, A. H., on behalf of the Steering Committee of the Coalition for Supportive Care of Kidney Patients. (2020). Recommendations for public policy changes to improve supportive care for seriously ill patients with kidney disease. American Journal of Kidney Disease, 77(4), 529-537. https://doi.org/10.1053/j.ajkd.2020.09.020
Feldman, R., Berman, N., Reid, M. C., Roberts, J., Shengelia, R., Christianer, K., Eiss, B., & Adelman, R. D. (2013). Improving symptom management in hemodialysis patients: Identifying barriers and future directions. Journal of Palliative Medicine, 16(12), 1528-1533. https://doi.org.10.1089/jpm.2013.0176
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. https://doi.org/10.1053/j.ajkd.2019.10.016
Hadley, G. (2017). Grounded theory in applied linguistics research: A practical guide. Routledge.
Haras, M. S., Astroth, K. S., Hesson-McInnis, M. S., Woith, W. M., & Kossman, S. P. (2015). Nephrology nurse perceptions toward advance care planning: Validation of a measure. Nephrology Nursing Journal, 42(4), 349-360. https://pubmed.ncbi.nlm.nih.gov/26462308/
Harris, D. C. H., Davies, S. J., Finkelstein, F. O., Jha, V., Donner, J., Abraham, G., Bello, A. K., Caskey, F. J., Garcia, G. G., Harden, P., Hemmelgarn, B., Johnson, D. W., Levin, N. W., Luyckx, V. A., Martin, D. E., McCulloch, M. I., Moosa, M. R., O’Connell, P. J., Okpechi, I. G., Filho, R. P., … Zuniga, C.; on behalf of the Working Groups of the International Society of Nephrology’s 2nd Global Kidney Health Summit. (2019). Increasing access to integrated ESKD care as part of universal health coverage. Kidney International, 95, S1-S33. https://doi.org/10.1016/j.kint.2018.12.005
Harris, D. C. H., Davies, S. J., Finkelstein, F. O., Jha, V., Bello, A. K., Brown, M., Caskey, F. J., Donner, J., Liew, A., Muller, E., Naicker, S., O’Connell, P. J., Filho, R. P., & Vachharajani, T., on behalf of the Strategic Plan Working Groups. (2020). Strategic plan for integrated care of patients with kidney failure. Kidney International, 98, S117-S134. https://doi.org/10/1016/j.kint.2020.07.023
Hutchison, L. A., Raffin-Bouchal, D. S., Syme, C. A., Biondo, P. D., & Simon, J. E. (2017). Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers. Chronic Illness, 13(3), 171-187. https://doi.org/10.1177/1742395316675023
Kidney Disease: Improving Global Outcomes (KDIGO) CKD Work Group. (2013). KDIGO 2012 Clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney International Supplements, 3(1), 1-150. https://kdigo.org/wp-content/uploads/2017/02/KDIGO_2012_CKD_GL.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. https://doi.org/10.2215/CJN.09330818
Lazenby, S., Edwards, A., Samuriwo, R., Riley, S., Murray, M. A., & Carson-Stevens, A. (2016). End-of-life care decisions for haemodialysis patients – “We only tend to have that discussion with them when they start deteriorating”. Health Expectations, 20(2), 260-273. https://doi.org/10.1111/hex.12454
Mills, J., Bonner, A., & Francis, K. (2006). The development of constructivist grounded theory. International Journal of Qualitative Methods, 5(1), 25-35. https://doi.org/10.1177/160940690600500103
Noble, H., Brazil, K., Burns, A., Hallahan, S., Normand, C., Roderick, P., Thompson, C., Maxwell, P., & Yaqoob, M. (2017). Clinician views of patient decisional conflict when deciding between dialysis and conservative management: Qualitative findings from the Palliative Care in chronic Kidney diSease (PACKS) study. Palliative Medicine, 31(10), 921-931. https://doi.org/10.1177/0269216317704625
O’Hare, A. M., Szarka, J., McFarland, L. V., Taylor, J. S., Sudore, R. L., Trivedi, R., Reinke, L. F., & Vig, E. K. (2016). Provider perspectives on advance care planning for patients with kidney disease: Whose job is it anyway? Clinical Journal of the American Society of Nephrology, 11, 855-866. https://doi.org.10.2215/CJN.11351015
Sawatzky, R., Porterfield, P., Lee, J., Dixon, D., Lounsbury, K., Pesut, B., Roberts, D., Tayler, C., Voth, J., & Stajduhar, K. (2016). Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care, 15(5), 1-14. https://doi.org.10.1186/s12904-016-0076-9
Sellars, M., Tong, A., Luckett, T., Morton, R. L., Pollock, C. A., Spencer, L., Silvester, W., & Clayton, J. M. (2017). Clinicians' perspectives on advance care planning for patients with CKD in Australia: An interview study. American Journal of Kidney Diseases, 70(3), 315-323. https://doi.org/10.1053/j.ajkd.2016.11.023
Smith, V., & Wise, K. (2017). Evaluating nurses’ action outcomes and exploring their perspectives of implementing the POS-S (Renal) assessment tool for haemodialysis patients. Renal Society of Australasia Journal, 13, 14-21. https://www.renalsociety.org/public/6/files/documents/RSAJ/2017.03/Smith.pdf
Tarrozzi, M. (2020). What is grounded theory? Bloomsbury.
Thorne, S., Roberts, D., & Sawatzky, R. (2016). Unravelling the tensions between chronic disease management and end-of-life planning. Research and Theory for Nursing Practice: An International Journal, 30(2), 91-103. https://dx.doi.org/10.18911541-6577.30.2.91
Tie, Y. C., Birks, M., & Francis, K. (2019). Grounded theory research: A design framework for novice researchers. SAGE Open Medicine, 7, 1-8. https://doi.org/10.1177/2050312118822927
Tweed, A. E., & Charmaz, K. (2011). Grounded theory for mental health practitioners. In A. Thompson and D. Harper (Eds.), Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners (pp. 131-146). Wiley-Blackwell.
Wachterman, M. W., Lipsitz, S. R., Lorenz, K. A., Marcantonio, E. R., Li, Z., & Keating, N. L. (2017). End-of-life experience of older adults dying of end stage renal disease: A comparison with cancer. Journal of Pain and Symptom Management, 54(6), 789-797. http://dx.doi.org/10.1016/j.painsymman.2017.08.013
Wong, S. P., Kreuter, W., & O'Hare, A. M. (2012). Treatment intensity at the end of life in older adults receiving long term dialysis. Archives of Internal Medicine, 172(8), 661-664. https://doi.org/10.1001/archinternmed.2012.268
World Health Organization. (2021, October 31). World Health Organization definition of palliative care. https://palliative.stanford.edu/overview-of-palliative-care/overview-of-palliative-care/world-health-organization-definition-of-palliative-care/