Skip to main content
Top
Published in: BMC Nephrology 1/2017

Open Access 01-12-2017 | Research article

Coping with kidney disease – qualitative findings from the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) study

Authors: Lalita Subramanian, Martha Quinn, Junhui Zhao, Laurie Lachance, Jarcy Zee, Francesca Tentori

Published in: BMC Nephrology | Issue 1/2017

Login to get access

Abstract

Background

The highly burdensome effects of kidney failure and its management impose many life-altering changes on patients. Better understanding of successful coping strategies will inform patients and help health care providers support patients’ needs as they navigate these changes together.

Methods

A qualitative, cross-sectional study involving semi-structured telephone interviews including open- and closed-ended questions, with 179 U.S. patients with advanced chronic kidney disease (CKD), either not yet on dialysis ([CKD-ND], n = 65), or on dialysis (hemodialysis [HD], n = 76; or peritoneal dialysis [PD], n = 38) recruited through social media and in-person contacts from June to December 2013. Themes identified through content analysis of interview transcripts were classified based on the Coping Strategies Index (CSI) and compared across groups by demographics, treatment modality, and health status.

Results

Overall, more engagement than disengagement strategies were observed. “Take care of myself and follow doctors’ orders,” “accept it,” and “rely on family and friends” were the common coping themes. Participants often used multiple coping strategies. Various factors such as treatment modality, time since diagnosis, presence of other chronic comorbidities, and self-perceived limitations contributed to types of coping strategies used by CKD patients.

Conclusions

The simultaneous use of coping strategies that span different categories within each of the CSI subscales by CKD patients reflects the complex and reactive response to the variable demands of the disease and its treatment options on their lives. Learning from the lived experience of others could empower patients to more frequently use positive coping strategies depending on their personal context as well as the stage of the disease and associated stressors. Moreover, this understanding can improve the support provided by health care systems and providers to patients to better deal with the many challenges they face in living with kidney disease.
Literature
1.
go back to reference United States Renal Data System. 2016 USRDS annual data report: Epidemiology of kidney disease in the United States. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2016. United States Renal Data System. 2016 USRDS annual data report: Epidemiology of kidney disease in the United States. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2016.
2.
go back to reference Clarke AL, Yates T, Smith AC, Chilcot J. Patient's perceptions of chronic kidney disease and their association with psychosocial and clinical outcomes: a narrative review. Clin Kidney J. 2016;9(3):494–502.CrossRefPubMedPubMedCentral Clarke AL, Yates T, Smith AC, Chilcot J. Patient's perceptions of chronic kidney disease and their association with psychosocial and clinical outcomes: a narrative review. Clin Kidney J. 2016;9(3):494–502.CrossRefPubMedPubMedCentral
3.
go back to reference Ronksley PE, Hemmelgarn BR. Optimizing care for patients with CKD. Am J Kidney Dis. 2012;60(1):133–8.CrossRefPubMed Ronksley PE, Hemmelgarn BR. Optimizing care for patients with CKD. Am J Kidney Dis. 2012;60(1):133–8.CrossRefPubMed
4.
go back to reference Kahn LS, Vest BM, Madurai N, Singh R, York TR, Cipparone CW, Reilly S, Malik KS, Fox CH. Chronic kidney disease (CKD) treatment burden among low-income primary care patients. Chronic Illn. 2015;11(3):171–83.CrossRefPubMed Kahn LS, Vest BM, Madurai N, Singh R, York TR, Cipparone CW, Reilly S, Malik KS, Fox CH. Chronic kidney disease (CKD) treatment burden among low-income primary care patients. Chronic Illn. 2015;11(3):171–83.CrossRefPubMed
5.
go back to reference Tong A, Sainsbury P, Chadban S, Walker RG, Harris DC, Carter SM, Hall B, Hawley C, Craig JC. Patients’ experiences and perspectives of living with CKD. Am J Kidney Dis. 2009;53(4):689–700.CrossRefPubMed Tong A, Sainsbury P, Chadban S, Walker RG, Harris DC, Carter SM, Hall B, Hawley C, Craig JC. Patients’ experiences and perspectives of living with CKD. Am J Kidney Dis. 2009;53(4):689–700.CrossRefPubMed
6.
go back to reference Reid C, Seymour J, Jones C. A thematic synthesis of the experiences of adults living with hemodialysis. Clin J Am Soc Nephrol. 2016;11(7):1206–18.CrossRefPubMed Reid C, Seymour J, Jones C. A thematic synthesis of the experiences of adults living with hemodialysis. Clin J Am Soc Nephrol. 2016;11(7):1206–18.CrossRefPubMed
7.
go back to reference Ahmad MM, Al Nazly EK. Hemodialysis: stressors and coping strategies. Psychol Health Med. 2015;20(4):477–87.CrossRefPubMed Ahmad MM, Al Nazly EK. Hemodialysis: stressors and coping strategies. Psychol Health Med. 2015;20(4):477–87.CrossRefPubMed
8.
go back to reference Mitch W. Chronic kidney disease. In: Goldman L, Ausiello D, editors. Text book of medicine, vol. 131. 23rd ed. Philadelphia, PA: Elsevier; 2007. p. 132. Mitch W. Chronic kidney disease. In: Goldman L, Ausiello D, editors. Text book of medicine, vol. 131. 23rd ed. Philadelphia, PA: Elsevier; 2007. p. 132.
9.
go back to reference Addison CC, Campbell-Jenkins BW, Sarpong DF, Kibler J, Singh M, Dubbert P, Wilson G, Payne T, Taylor H. Psychometric evaluation of a coping strategies inventory short-form (CSI-SF) in the Jackson heart study cohort. Int J Environ Res Public Health. 2007;4(4):289–95.CrossRefPubMedPubMedCentral Addison CC, Campbell-Jenkins BW, Sarpong DF, Kibler J, Singh M, Dubbert P, Wilson G, Payne T, Taylor H. Psychometric evaluation of a coping strategies inventory short-form (CSI-SF) in the Jackson heart study cohort. Int J Environ Res Public Health. 2007;4(4):289–95.CrossRefPubMedPubMedCentral
10.
go back to reference Reynolds P, Hurley S, Torres M, Jackson J, Boyd P, Chen VW. Use of coping strategies and breast cancer survival: results from the black/white cancer survival study. Am J Epidemiol. 2000;152(10):940–9.CrossRefPubMed Reynolds P, Hurley S, Torres M, Jackson J, Boyd P, Chen VW. Use of coping strategies and breast cancer survival: results from the black/white cancer survival study. Am J Epidemiol. 2000;152(10):940–9.CrossRefPubMed
12.
go back to reference Chatrung C, Sorajjakool S, Amnatsatsue K. Wellness and religious coping among thai individuals living with chronic kidney disease in Southern California. J Relig Health. 2015;54(6):2198–211.CrossRefPubMed Chatrung C, Sorajjakool S, Amnatsatsue K. Wellness and religious coping among thai individuals living with chronic kidney disease in Southern California. J Relig Health. 2015;54(6):2198–211.CrossRefPubMed
13.
go back to reference Tobin DL, Holroyd KA, Reynolds RV, Wigal JK. The hierarchical factor structure of the coping strategies inventory. Cogn Ther Res. 1989;13(4):343–61.CrossRef Tobin DL, Holroyd KA, Reynolds RV, Wigal JK. The hierarchical factor structure of the coping strategies inventory. Cogn Ther Res. 1989;13(4):343–61.CrossRef
14.
go back to reference Addison CC, Campbell-Jenkins BW, Sarpong DF, Kibler J, Singh M, Dubbert P, Wilson G, Payne T, Taylor H, et al. Psychometric evaluation of a coping strategies inventory short-form (CSI-SF) in the Jackson heart study cohort. Int J Environ Res Public Health. 2007;4:243–9. Int J Environ Res Public Health. 2009;6(3):941-2.CrossRef Addison CC, Campbell-Jenkins BW, Sarpong DF, Kibler J, Singh M, Dubbert P, Wilson G, Payne T, Taylor H, et al. Psychometric evaluation of a coping strategies inventory short-form (CSI-SF) in the Jackson heart study cohort. Int J Environ Res Public Health. 2007;4:243–9. Int J Environ Res Public Health. 2009;6(3):941-2.CrossRef
15.
go back to reference Carver CS, Scheier MF, Weintraub JK. Assessing coping strategies: a theoretically based approach. J Pers Soc Psychol. 1989;56(2):267.CrossRefPubMed Carver CS, Scheier MF, Weintraub JK. Assessing coping strategies: a theoretically based approach. J Pers Soc Psychol. 1989;56(2):267.CrossRefPubMed
16.
go back to reference Blount RL, Simons LE, Devine KA, Jaaniste T, Cohen LL, Chambers CT, Hayutin LG. Evidence-based assessment of coping and stress in pediatric psychology. J Pediatr Psychol. 2008;33(9):1021–45.CrossRefPubMed Blount RL, Simons LE, Devine KA, Jaaniste T, Cohen LL, Chambers CT, Hayutin LG. Evidence-based assessment of coping and stress in pediatric psychology. J Pediatr Psychol. 2008;33(9):1021–45.CrossRefPubMed
17.
go back to reference Fernandez CA, Loucks EB, Arheart KL, Hickson DA, Kohn R, Buka SL, Gjelsvik A. Evaluating the effects of coping style on allostatic load, by sex: the Jackson Heart Study, 2000–2004. Prev Chronic Dis. 2015;12:150–66.CrossRef Fernandez CA, Loucks EB, Arheart KL, Hickson DA, Kohn R, Buka SL, Gjelsvik A. Evaluating the effects of coping style on allostatic load, by sex: the Jackson Heart Study, 2000–2004. Prev Chronic Dis. 2015;12:150–66.CrossRef
18.
go back to reference Delfino JP, Barragán E, Botella C, Braun S, Bridler R, Camussi E, Chafrat V, Lott P, Mohr C, Moragrega I, Papagno C, Sanchez S, Seifritz E, Soler C, Stassen HH. Quantifying insufficient coping behavior under chronic stress: a cross-cultural study of 1,303 students from Italy, Spain and Argentina. Psychopathology. 2015;48(4):230–9.CrossRefPubMed Delfino JP, Barragán E, Botella C, Braun S, Bridler R, Camussi E, Chafrat V, Lott P, Mohr C, Moragrega I, Papagno C, Sanchez S, Seifritz E, Soler C, Stassen HH. Quantifying insufficient coping behavior under chronic stress: a cross-cultural study of 1,303 students from Italy, Spain and Argentina. Psychopathology. 2015;48(4):230–9.CrossRefPubMed
19.
go back to reference Mackner LM, Crandall WV. Oral medication adherence in pediatric inflammatory bowel disease. Inflamm Bowel Dis. 2005;11(11):1006–12.CrossRefPubMed Mackner LM, Crandall WV. Oral medication adherence in pediatric inflammatory bowel disease. Inflamm Bowel Dis. 2005;11(11):1006–12.CrossRefPubMed
20.
go back to reference Speyer E, Morgenstern H, Hayashino Y, Kerr PG, Rayner H, Robinson BM, Pisoni RL. Reliability and validity of the coping strategy inventory-short form applied to hemodialysis patients in 13 countries: results from the dialysis outcomes and practice patterns study (DOPPS). J Psychosom Res. 2016;91:12–9.CrossRefPubMed Speyer E, Morgenstern H, Hayashino Y, Kerr PG, Rayner H, Robinson BM, Pisoni RL. Reliability and validity of the coping strategy inventory-short form applied to hemodialysis patients in 13 countries: results from the dialysis outcomes and practice patterns study (DOPPS). J Psychosom Res. 2016;91:12–9.CrossRefPubMed
21.
go back to reference Dahlerus C, Quinn M, Messersmith E, Lachance L, Subramanian L, Perry E, Cole J, Zhao J, Lee C, McCall M, Paulson L, Tentori F. Patient perspectives on the choice of dialysis modality: results from the empowering patients on choices for renal replacement therapy (EPOCH-RRT) study. Am J Kidney Dis. 2016;68(6):901–10. doi:10.1053/j.ajkd.2016.05.010. PMID: 27337991.CrossRefPubMed Dahlerus C, Quinn M, Messersmith E, Lachance L, Subramanian L, Perry E, Cole J, Zhao J, Lee C, McCall M, Paulson L, Tentori F. Patient perspectives on the choice of dialysis modality: results from the empowering patients on choices for renal replacement therapy (EPOCH-RRT) study. Am J Kidney Dis. 2016;68(6):901–10. doi:10.​1053/​j.​ajkd.​2016.​05.​010. PMID: 27337991.CrossRefPubMed
22.
go back to reference Palmer SC, Hanson CS, Craig JC, Strippoli GF, Ruospo M, Campbell K, Johnson DW, Tong A. Dietary and fluid restrictions in CKD: a thematic synthesis of patient views from qualitative studies. Am J Kidney Dis. 2015;65(4):559–73.CrossRefPubMed Palmer SC, Hanson CS, Craig JC, Strippoli GF, Ruospo M, Campbell K, Johnson DW, Tong A. Dietary and fluid restrictions in CKD: a thematic synthesis of patient views from qualitative studies. Am J Kidney Dis. 2015;65(4):559–73.CrossRefPubMed
24.
go back to reference Ghimire S, Castelino RL, Lioufas NM, Peterson GM, Zaidi ST. Nonadherence to medication therapy in haemodialysis patients: a systematic review. PLoS ONE. 2015;10(12):e0144119.CrossRefPubMedPubMedCentral Ghimire S, Castelino RL, Lioufas NM, Peterson GM, Zaidi ST. Nonadherence to medication therapy in haemodialysis patients: a systematic review. PLoS ONE. 2015;10(12):e0144119.CrossRefPubMedPubMedCentral
25.
go back to reference Yu J, Ng HJ, Nandakumar M, Griva K. The management of food cravings and thirst in hemodialysis patients: a qualitative study. J Health Psychol. 2016;21(2):217–27.CrossRefPubMed Yu J, Ng HJ, Nandakumar M, Griva K. The management of food cravings and thirst in hemodialysis patients: a qualitative study. J Health Psychol. 2016;21(2):217–27.CrossRefPubMed
26.
go back to reference Kohli S, Batra P, Aggarwal HK. Anxiety, locus of control, and coping strategies among end-stage renal disease patients undergoing maintenance hemodialysis. Indian J Nephrol. 2011;21(3):177–81.CrossRefPubMedPubMedCentral Kohli S, Batra P, Aggarwal HK. Anxiety, locus of control, and coping strategies among end-stage renal disease patients undergoing maintenance hemodialysis. Indian J Nephrol. 2011;21(3):177–81.CrossRefPubMedPubMedCentral
27.
go back to reference Birmelé B, Le Gall A, Sautenet B, Aguerre C, Camus V. Clinical, sociodemographic, and psychological correlates of health-related quality of life in chronic hemodialysis patients. Psychosomatics. 2012;53(1):30–7.CrossRefPubMed Birmelé B, Le Gall A, Sautenet B, Aguerre C, Camus V. Clinical, sociodemographic, and psychological correlates of health-related quality of life in chronic hemodialysis patients. Psychosomatics. 2012;53(1):30–7.CrossRefPubMed
28.
29.
go back to reference Penley JA, Tomaka J, Wiebe JS. The association of coping to physical and psychological health outcomes: A meta-analytic review. J Behav Med. 2002;25(6):551–603.CrossRefPubMed Penley JA, Tomaka J, Wiebe JS. The association of coping to physical and psychological health outcomes: A meta-analytic review. J Behav Med. 2002;25(6):551–603.CrossRefPubMed
30.
go back to reference Pucheu S, Consoli SM, D'Auzac C, Français P, Issad B. Do health causal attributions and coping strategies act as moderators of quality of life in peritoneal dialysis patients? J Psychosom Res. 2004;56(3):317–22.CrossRefPubMed Pucheu S, Consoli SM, D'Auzac C, Français P, Issad B. Do health causal attributions and coping strategies act as moderators of quality of life in peritoneal dialysis patients? J Psychosom Res. 2004;56(3):317–22.CrossRefPubMed
31.
go back to reference Takaki J, Nishi T, Shimoyama H, Inada T, Matsuyama N, Kumano H, Kuboki T. Possible interactive effects of demographic factors and stress coping mechanisms on depression and anxiety in maintenance hemodialysis patients. J Psychosom Res. 2005;58(3):217–23.CrossRefPubMed Takaki J, Nishi T, Shimoyama H, Inada T, Matsuyama N, Kumano H, Kuboki T. Possible interactive effects of demographic factors and stress coping mechanisms on depression and anxiety in maintenance hemodialysis patients. J Psychosom Res. 2005;58(3):217–23.CrossRefPubMed
32.
go back to reference O'Connor SM, Jardine AG, Millar K. The prediction of self-care behaviors in end-stage renal disease patients using Leventhal's Self-Regulatory Model. J Psychosom Res. 2008;65(2):191–200.CrossRefPubMed O'Connor SM, Jardine AG, Millar K. The prediction of self-care behaviors in end-stage renal disease patients using Leventhal's Self-Regulatory Model. J Psychosom Res. 2008;65(2):191–200.CrossRefPubMed
33.
go back to reference Nowak Z, Wańkowicz Z, Laudanski K. Denial defense mechanism in dialyzed patients. Med Sci Monit. 2015;22(21):1798–805. Nowak Z, Wańkowicz Z, Laudanski K. Denial defense mechanism in dialyzed patients. Med Sci Monit. 2015;22(21):1798–805.
34.
go back to reference Cormier-Daigle M, Stewart M. Support and coping of male hemodialysis-dependent patients. Int J Nurs Stud. 1997;34(6):420–30.CrossRefPubMed Cormier-Daigle M, Stewart M. Support and coping of male hemodialysis-dependent patients. Int J Nurs Stud. 1997;34(6):420–30.CrossRefPubMed
35.
go back to reference Tong A, Craig JC. Tuning into qualitative research-a channel for the patient voice. Clin J Am Soc Nephrol. 2016;11(7):1128–30.CrossRefPubMed Tong A, Craig JC. Tuning into qualitative research-a channel for the patient voice. Clin J Am Soc Nephrol. 2016;11(7):1128–30.CrossRefPubMed
36.
go back to reference Gilbar O, Or-Han K, Plivazky N. Mental adjustment, coping strategies, and psychological distress among end-stage renal disease patients. J Psychosom Res. 2005;58(6):471–6.CrossRefPubMed Gilbar O, Or-Han K, Plivazky N. Mental adjustment, coping strategies, and psychological distress among end-stage renal disease patients. J Psychosom Res. 2005;58(6):471–6.CrossRefPubMed
37.
go back to reference Watson M, Greer S, Young J, Inayat Q, Burgess C, Robertson B. Development of a questionnaire measure of adjustment to cancer: the MAC scale. Psychol Med. 1988;18(01):203–9.CrossRefPubMed Watson M, Greer S, Young J, Inayat Q, Burgess C, Robertson B. Development of a questionnaire measure of adjustment to cancer: the MAC scale. Psychol Med. 1988;18(01):203–9.CrossRefPubMed
38.
go back to reference Wolf EJ, Mori DL. Avoidant coping as a predictor of mortality in veterans with end-stage renal disease. Health Psychol. 2009;28(3):330–7.CrossRefPubMed Wolf EJ, Mori DL. Avoidant coping as a predictor of mortality in veterans with end-stage renal disease. Health Psychol. 2009;28(3):330–7.CrossRefPubMed
Metadata
Title
Coping with kidney disease – qualitative findings from the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) study
Authors
Lalita Subramanian
Martha Quinn
Junhui Zhao
Laurie Lachance
Jarcy Zee
Francesca Tentori
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Nephrology / Issue 1/2017
Electronic ISSN: 1471-2369
DOI
https://doi.org/10.1186/s12882-017-0542-5

Other articles of this Issue 1/2017

BMC Nephrology 1/2017 Go to the issue
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Watch this official video from ACC.24. Dr. Biykem Bozkurt discuss last year's major advances in heart failure and cardiomyopathies.