TY - JOUR
TI - A Focus Group Study of Self-Management in Patients With Glomerular
Disease
AU - Carter, Simon A.
AU - Teng, Claris
AU - Gutman, Talia
AU - Logeman,
AU - Charlotte
AU - Cattran, Dan
AU - Lightstone, Liz
AU - Bagga, Arvind and
AU - Barbour, Sean J.
AU - Barratt, Jonathan
AU - Boletis, John
AU - Caster,
AU - Dawn J.
AU - Coppo, Rosanna
AU - Fervenza, Fernando C.
AU - Floege, Jurgen
AU - and Hladunewich, Michelle A.
AU - Hogan, Jonathan J.
AU - Kitching, A.
AU - Richard
AU - Lafayette, Richard A.
AU - Malvar, Ana
AU - Radhakrishnan, Jai
AU - and Rovin, Brad H.
AU - Scholes-Robertson, Nicole
AU - Trimarchi, Hernan
AU - and Zhang, Hong
AU - Azukaitis, Karolis
AU - Cho, Yeoungjee
AU - Viecelli,
AU - Andrea K.
AU - Dunn, Louese
AU - Harris, David
AU - Johnson, David W. and
AU - Kerr, Peter G.
AU - Laboi, Paul
AU - Ryan, Jessica
AU - Shen, I, Jenny and
AU - Ruiz, Lorena
AU - Wang, Angela Yee-Moon
AU - Lee, Achilles Hoi Kan and
AU - Shun, Samuel Fung Ka
AU - Tong, Matthew Ka-Hang
AU - Teixeira-Pinto,
AU - Armando
AU - Wilkie, Martin
AU - Alexander, I, Stephen
AU - Craig, Jonathan
AU - C.
AU - Martin, Adam
AU - Tong, Allison
JO - Kidney International Reports
PY - 2022
VL - 7
TODO - 1
SP - 56-67
PB - EXCERPTA MEDICA INC-ELSEVIER SCIENCE INC
SN - 2468-0249
TODO - 10.1016/j.ekir.2021.10.011
TODO - focus groups; glomerulonephritis; personal autonomy; self-management;
therapeutic alliance
TODO - 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); over-whelmed 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.
ER -