@article{3033603,
    title = "A Focus Group Study of Self-Management in Patients With Glomerular
Disease",
    author = "Carter, Simon A. and Teng, Claris and Gutman, Talia and Logeman, and Charlotte and Cattran, Dan and Lightstone, Liz and Bagga, Arvind and and Barbour, Sean J. and Barratt, Jonathan and Boletis, John and Caster, and Dawn J. and Coppo, Rosanna and Fervenza, Fernando C. and Floege, Jurgen and and Hladunewich, Michelle A. and Hogan, Jonathan J. and Kitching, A. and Richard and Lafayette, Richard A. and Malvar, Ana and Radhakrishnan, Jai and and Rovin, Brad H. and Scholes-Robertson, Nicole and Trimarchi, Hernan and and Zhang, Hong and Azukaitis, Karolis and Cho, Yeoungjee and Viecelli, and Andrea K. and Dunn, Louese and Harris, David and Johnson, David W. and and Kerr, Peter G. and Laboi, Paul and Ryan, Jessica and Shen, I, Jenny and and Ruiz, Lorena and Wang, Angela Yee-Moon and Lee, Achilles Hoi Kan and and Shun, Samuel Fung Ka and Tong, Matthew Ka-Hang and Teixeira-Pinto, and Armando and Wilkie, Martin and Alexander, I, Stephen and Craig, Jonathan and C. and Martin, Adam and Tong, Allison",
    journal = "Kidney International Reports",
    year = "2022",
    volume = "7",
    number = "1",
    pages = "56-67",
    publisher = "EXCERPTA MEDICA INC-ELSEVIER SCIENCE INC",
    issn = "2468-0249",
    doi = "10.1016/j.ekir.2021.10.011",
    keywords = "focus groups; glomerulonephritis; personal autonomy; self-management;
therapeutic alliance",
    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); 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."
}