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