Abstract
Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. Methods: We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. Results: We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Conclusion: Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.
Original language | English |
---|---|
Pages (from-to) | 56-67 |
Number of pages | 12 |
Journal | Kidney International Reports |
Volume | 7 |
Issue number | 1 |
DOIs | |
Publication status | Published - Jan 2022 |
Keywords
- focus groups
- glomerulonephritis
- personal autonomy
- self-management
- therapeutic alliance
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In: Kidney International Reports, Vol. 7, No. 1, 01.2022, p. 56-67.
Research output: Contribution to journal › Article › Research › peer-review
TY - JOUR
T1 - A Focus Group Study of Self-Management in Patients With Glomerular Disease
AU - Carter, Simon A.
AU - Teng, Claris
AU - Gutman, Talia
AU - Logeman, Charlotte
AU - Cattran, Dan
AU - Lightstone, Liz
AU - Bagga, Arvind
AU - Barbour, Sean J.
AU - Barratt, Jonathan
AU - Boletis, John
AU - Caster, Dawn J.
AU - Coppo, Rosanna
AU - Fervenza, Fernando C.
AU - Floege, Jürgen
AU - Hladunewich, Michelle A.
AU - Hogan, Jonathan J.
AU - Kitching, A. Richard
AU - Lafayette, Richard A.
AU - Malvar, Ana
AU - Radhakrishnan, Jai
AU - Rovin, Brad H.
AU - Scholes-Robertson, Nicole
AU - Trimarchi, Hernán
AU - Zhang, Hong
AU - Azukaitis, Karolis
AU - Cho, Yeoungjee
AU - Viecelli, Andrea K.
AU - Dunn, Louese
AU - Harris, David
AU - Johnson, David W.
AU - Kerr, Peter G.
AU - Laboi, Paul
AU - Ryan, Jessica
AU - Shen, Jenny I.
AU - Ruiz, Lorena
AU - Wang, Angela Yee Moon
AU - Lee, Achilles Hoi Kan
AU - Ka Shun, Samuel Fung
AU - Ka-Hang Tong, Matthew
AU - Teixeira-Pinto, Armando
AU - Wilkie, Martin
AU - Alexander, Stephen I.
AU - Craig, Jonathan C.
AU - Martin, Adam
AU - Tong, Allison
N1 - Funding Information: We are grateful to the patients and their care partners who generously gave their time and shared their experiences during this study. This project is supported by a National Health and Medical Research Council (NHMRC) Program Grant (1092957). SAC is supported by the NHMRC Postgraduate Scholarship (1168994). DJC is supported by grant K08DK102542 from the National Institutes of Health. YC is supported by the NHMRC Early Career Fellowship (1126256). TG is supported by a NHMRC Postgraduate Scholarship (1169149). DJ is supported by a NHMRC Practitioner Fellowship (1117534). JIS is supported by grant K23DK103972 from the National Institutes of Health. ATP is supported by a NHMRC Career Development Fellowship (1106716). AKV received grant support from the NHMRC Medical Postgraduate Scholarship (1114539). NSR is supported by a National Health and Medical Research Council Postgraduate Scholarship (1190850). The funding bodies did not have a role in the design, collection, analysis, and interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication. The remaining authors have no financial relationships relevant to this article to disclose. Research idea and study design: SAC, TG, DC, LL, AB, SJB, JBa, JBo, DJC, RC, FCC, JF, MAH, JJH, ARK, RAL, AMal, JRa, BHR, NSR, HT, HZ, YC, AKV, JIS, AYMW, ATP, JCC, AT; data acquisition: SAC, TG, CL, KA, YC, AKV, LD, DH, DWJ, PGK, PL, JRy, JIS, LR, AYMW, AHKL, SFKS, MKHT, MW, AT; data analysis/interpretation: SAC, CT, TG, AMar, AT; supervision or mentorship: DC, LL, AB, SJB, JBa, JBo, DJC, RC, FCC, JF, MAH, JJH, ARK, RAL, AMal, JRa, BHR, NSR, HT, HZ, ATP, SIA, JCC, AT. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. Funding Information: We are grateful to the patients and their care partners who generously gave their time and shared their experiences during this study. This project is supported by a National Health and Medical Research Council (NHMRC) Program Grant ( 1092957 ). SAC is supported by the NHMRC Postgraduate Scholarship ( 1168994 ). DJC is supported by grant K08DK102542 from the National Institutes of Health . YC is supported by the NHMRC Early Career Fellowship ( 1126256 ). TG is supported by a NHMRC Postgraduate Scholarship ( 1169149 ). DJ is supported by a NHMRC Practitioner Fellowship ( 1117534 ). JIS is supported by grant K23DK103972 from the National Institutes of Health . ATP is supported by a NHMRC Career Development Fellowship ( 1106716 ). AKV received grant support from the NHMRC Medical Postgraduate Scholarship ( 1114539 ). NSR is supported by a National Health and Medical Research Council Postgraduate Scholarship ( 1190850 ). The funding bodies did not have a role in the design, collection, analysis, and interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication. The remaining authors have no financial relationships relevant to this article to disclose. Publisher Copyright: © 2021 International Society of Nephrology
PY - 2022/1
Y1 - 2022/1
N2 - Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. Methods: We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. Results: We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Conclusion: Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.
AB - Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. Methods: We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. Results: We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Conclusion: Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.
KW - focus groups
KW - glomerulonephritis
KW - personal autonomy
KW - self-management
KW - therapeutic alliance
UR - http://www.scopus.com/inward/record.url?scp=85120357706&partnerID=8YFLogxK
U2 - 10.1016/j.ekir.2021.10.011
DO - 10.1016/j.ekir.2021.10.011
M3 - Article
C2 - 35005314
AN - SCOPUS:85120357706
SN - 2468-0249
VL - 7
SP - 56
EP - 67
JO - Kidney International Reports
JF - Kidney International Reports
IS - 1
ER -