A Focus Group Study of Self-Management in Patients With Glomerular Disease

Simon A. Carter; Claris Teng; Talia Gutman; Charlotte Logeman; Dan Cattran; Liz Lightstone; Arvind Bagga; Sean J. Barbour; Jonathan Barratt; John Boletis; Dawn J. Caster; Rosanna Coppo; Fernando C. Fervenza; Jürgen Floege; Michelle A. Hladunewich; Jonathan J. Hogan; A. Richard Kitching; Richard A. Lafayette; Ana Malvar; Jai Radhakrishnan; Brad H. Rovin; Nicole Scholes-Robertson; Hernán Trimarchi; Hong Zhang; Karolis Azukaitis; Yeoungjee Cho; Andrea K. Viecelli; Louese Dunn; David Harris; David W. Johnson; Peter G. Kerr; Paul Laboi; Jessica Ryan; Jenny I. Shen; Lorena Ruiz; Angela Yee Moon Wang; Achilles Hoi Kan Lee; Samuel Fung Ka Shun; Matthew Ka-Hang Tong; Armando Teixeira-Pinto; Martin Wilkie; Stephen I. Alexander; Jonathan C. Craig; Adam Martin; Allison Tong

doi:10.1016/j.ekir.2021.10.011

A Focus Group Study of Self-Management in Patients With Glomerular Disease

Simon A. Carter, Claris Teng, Talia Gutman, Charlotte Logeman, Dan Cattran, Liz Lightstone, Arvind Bagga, Sean J. Barbour, Jonathan Barratt, John Boletis, Dawn J. Caster, Rosanna Coppo, Fernando C. Fervenza, Jürgen Floege, Michelle A. Hladunewich, Jonathan J. Hogan, A. Richard Kitching, Richard A. Lafayette, Ana Malvar, Jai RadhakrishnanBrad H. Rovin, Nicole Scholes-Robertson, Hernán Trimarchi, Hong Zhang, Karolis Azukaitis, Yeoungjee Cho, Andrea K. Viecelli, Louese Dunn, David Harris, David W. Johnson, Peter G. Kerr, Paul Laboi, Jessica Ryan, Jenny I. Shen, Lorena Ruiz, Angela Yee Moon Wang, Achilles Hoi Kan Lee, Samuel Fung Ka Shun, Matthew Ka-Hang Tong, Armando Teixeira-Pinto, Martin Wilkie, Stephen I. Alexander, Jonathan C. Craig, Adam Martin, Allison Tong

College of Medicine and Public Health

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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	https://doi.org/10.1016/j.ekir.2021.10.011
Publication status	Published - 1 Jan 2022

Keywords

focus groups
glomerulonephritis
personal autonomy
self-management
therapeutic alliance

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Carter, S. A., Teng, C., Gutman, T., Logeman, C., Cattran, D., Lightstone, L., Bagga, A., Barbour, S. J., Barratt, J., Boletis, J., Caster, D. J., Coppo, R., Fervenza, F. C., Floege, J., Hladunewich, M. A., Hogan, J. J., Kitching, A. R., Lafayette, R. A., Malvar, A., ... Tong, A. (2022). A Focus Group Study of Self-Management in Patients With Glomerular Disease. Kidney International Reports, 7(1), 56-67. https://doi.org/10.1016/j.ekir.2021.10.011

@article{377b9ff0732142b099da855166718fa0,

title = "A Focus Group Study of Self-Management in Patients With Glomerular Disease",

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.",

keywords = "focus groups, glomerulonephritis, personal autonomy, self-management, therapeutic alliance",

author = "Carter, {Simon A.} and Claris Teng and Talia Gutman and Charlotte Logeman and Dan Cattran and Liz Lightstone and Arvind Bagga and Barbour, {Sean J.} and Jonathan Barratt and John Boletis and Caster, {Dawn J.} and Rosanna Coppo and Fervenza, {Fernando C.} and J{\"u}rgen Floege and Hladunewich, {Michelle A.} and Hogan, {Jonathan J.} and Kitching, {A. Richard} and Lafayette, {Richard A.} and Ana Malvar and Jai Radhakrishnan and Rovin, {Brad H.} and Nicole Scholes-Robertson and Hern{\'a}n Trimarchi and Hong Zhang and Karolis Azukaitis and Yeoungjee Cho and Viecelli, {Andrea K.} and Louese Dunn and David Harris and Johnson, {David W.} and Kerr, {Peter G.} and Paul Laboi and Jessica Ryan and Shen, {Jenny I.} and Lorena Ruiz and Wang, {Angela Yee Moon} and Lee, {Achilles Hoi Kan} and {Ka Shun}, {Samuel Fung} and {Ka-Hang Tong}, Matthew and Armando Teixeira-Pinto and Martin Wilkie and Alexander, {Stephen I.} and Craig, {Jonathan C.} and Adam Martin and Allison Tong",

year = "2022",

month = jan,

day = "1",

doi = "10.1016/j.ekir.2021.10.011",

language = "English",

volume = "7",

pages = "56--67",

journal = "Kidney International Reports",

issn = "2468-0249",

publisher = "Elsevier Inc.",

number = "1",

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Carter, SA, Teng, C, Gutman, T, Logeman, C, Cattran, D, Lightstone, L, Bagga, A, Barbour, SJ, Barratt, J, Boletis, J, Caster, DJ, Coppo, R, Fervenza, FC, Floege, J, Hladunewich, MA, Hogan, JJ, Kitching, AR, Lafayette, RA, Malvar, A, Radhakrishnan, J, Rovin, BH, Scholes-Robertson, N, Trimarchi, H, Zhang, H, Azukaitis, K, Cho, Y, Viecelli, AK, Dunn, L, Harris, D, Johnson, DW, Kerr, PG, Laboi, P, Ryan, J, Shen, JI, Ruiz, L, Wang, AYM, Lee, AHK, Ka Shun, SF, Ka-Hang Tong, M, Teixeira-Pinto, A, Wilkie, M, Alexander, SI, Craig, JC, Martin, A & Tong, A 2022, 'A Focus Group Study of Self-Management in Patients With Glomerular Disease', Kidney International Reports, vol. 7, no. 1, pp. 56-67. https://doi.org/10.1016/j.ekir.2021.10.011

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

PY - 2022/1/1

Y1 - 2022/1/1

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

UR - http://purl.org/au-research/grants/NHMRC/1092957

UR - http://purl.org/au-research/grants/NHMRC/1117534

U2 - 10.1016/j.ekir.2021.10.011

DO - 10.1016/j.ekir.2021.10.011

M3 - Article

AN - SCOPUS:85120357706

SN - 2468-0249

VL - 7

SP - 56

EP - 67

JO - Kidney International Reports

JF - Kidney International Reports

IS - 1

ER -

A Focus Group Study of Self-Management in Patients With Glomerular Disease

Abstract

Keywords

UN SDGs

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