Notice: Users may be experiencing issues with displaying some pages on stanfordhealthcare.org. We are working closely with our technical teams to resolve the issue as quickly as possible. Thank you for your patience.
 

Learn about the flu shot, COVID-19 vaccine, and our masking policy »

Stanford Health Care

A Focus Group Study of Self-Management in Patients With Glomerular Disease. Kidney international reports 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., Radhakrishnan, J., Rovin, B. H., Scholes-Robertson, N., Trimarchi, H., Zhang, H., Azukaitis, K., Cho, Y., Viecelli, A. K., Dunn, L., Harris, D., Johnson, D. W., Kerr, P. G., Laboi, P., Ryan, J., Shen, J. I., Ruiz, L., Wang, A. Y., Lee, A. H., Ka Shun, S. F., Ka-Hang Tong, M., Teixeira-Pinto, A., Wilkie, M., Alexander, S. I., Craig, J. C., Martin, A., Tong, A. 1800; 7 (1): 56-67

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.

View details for DOI 10.1016/j.ekir.2021.10.011

View details for PubMedID 35005314