TY - JOUR
T1 - Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care
T2 - A qualitative study
AU - Feldman, C. H.
AU - Bermas, B. L.
AU - Zibit, M.
AU - Fraser, P.
AU - Todd, D. J.
AU - Fortin, P. R.
AU - Massarotti, E.
AU - Costenbader, K. H.
N1 - Funding Information:
Research reported in this publication was supported by the Martin P. Solomon Fellowship, Department of Internal Medicine, Brigham and Women's Hospital (CHF), and by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health under Award Number R01 AR057327 (KHC). CHF is currently supported by the Clinical Orthopedic and Musculoskeletal Education and Training Program under Award Number 5 T32 AR055885 (NIH/NIAMS). These funding sources played no role in the design, conduct, interpretation or report of these analyses. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
PY - 2013/1
Y1 - 2013/1
N2 - Objective: Systemic lupus erythematosus (lupus) disproportionately affects women, racial/ ethnic minorities and low-income populations. We held focus groups for women from medically underserved communities to discuss interventions to improve care. Methods: From our Lupus Registry, we invited 282 women, ≥18 years, residing in urban, medically underserved areas. Hospital-based clinics and support groups also recruited participants. Women were randomly assigned to three focus groups. Seventy-five-minute sessions were recorded, transcribed and coded thematically using interpretative phenomenologic analysis and single counting methods. We categorized interventions by benefits, limitations, target populations and implementation questions. Results: Twenty-nine women with lupus participated in three focus groups, (n=9, 9, 11). 80% were African American and 83% were from medically underserved zip codes. Themes included the desire for lupus education, isolation at the time of diagnosis, emotional and physical barriers to care, and the need for assistance navigating the healthcare system. Twenty of 29 participants (69%) favored a peer support intervention; 17 (59%) also supported a lupus health passport. Newly diagnosed women were optimal intervention targets. Improvements in quality of life and mental health were proposed outcome measures. Conclusion: Women with lupus from medically underserved areas have unique needs best addressed with an intervention designed through collaboration between community members and researchers.
AB - Objective: Systemic lupus erythematosus (lupus) disproportionately affects women, racial/ ethnic minorities and low-income populations. We held focus groups for women from medically underserved communities to discuss interventions to improve care. Methods: From our Lupus Registry, we invited 282 women, ≥18 years, residing in urban, medically underserved areas. Hospital-based clinics and support groups also recruited participants. Women were randomly assigned to three focus groups. Seventy-five-minute sessions were recorded, transcribed and coded thematically using interpretative phenomenologic analysis and single counting methods. We categorized interventions by benefits, limitations, target populations and implementation questions. Results: Twenty-nine women with lupus participated in three focus groups, (n=9, 9, 11). 80% were African American and 83% were from medically underserved zip codes. Themes included the desire for lupus education, isolation at the time of diagnosis, emotional and physical barriers to care, and the need for assistance navigating the healthcare system. Twenty of 29 participants (69%) favored a peer support intervention; 17 (59%) also supported a lupus health passport. Newly diagnosed women were optimal intervention targets. Improvements in quality of life and mental health were proposed outcome measures. Conclusion: Women with lupus from medically underserved areas have unique needs best addressed with an intervention designed through collaboration between community members and researchers.
KW - African Americans
KW - Disparities
KW - qualitative research
KW - systemic lupus erythematosus
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U2 - 10.1177/0961203312463979
DO - 10.1177/0961203312463979
M3 - Article
C2 - 23087258
AN - SCOPUS:84871578411
SN - 0961-2033
VL - 22
SP - 52
EP - 62
JO - Lupus
JF - Lupus
IS - 1
ER -