Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care

A qualitative study

C. H. Feldman, B. L. Bermas, M. Zibit, P. Fraser, D. J. Todd, P. R. Fortin, E. Massarotti, K. H. Costenbader

Research output: Contribution to journalArticle

15 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)52-62
Number of pages11
JournalLupus
Volume22
Issue number1
DOIs
StatePublished - Jan 1 2013

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Medically Underserved Area
Systemic Lupus Erythematosus
Focus Groups
Architectural Accessibility
Self-Help Groups
Health Services Needs and Demand
Poverty
African Americans
Registries
Mental Health
Quality of Life
Research Personnel
Outcome Assessment (Health Care)
Delivery of Health Care
Education

Keywords

  • African Americans
  • Disparities
  • qualitative research
  • systemic lupus erythematosus

ASJC Scopus subject areas

  • Rheumatology

Cite this

Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care : A qualitative study. / Feldman, C. H.; Bermas, B. L.; Zibit, M.; Fraser, P.; Todd, D. J.; Fortin, P. R.; Massarotti, E.; Costenbader, K. H.

In: Lupus, Vol. 22, No. 1, 01.01.2013, p. 52-62.

Research output: Contribution to journalArticle

Feldman, C. H. ; Bermas, B. L. ; Zibit, M. ; Fraser, P. ; Todd, D. J. ; Fortin, P. R. ; Massarotti, E. ; Costenbader, K. H. / Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care : A qualitative study. In: Lupus. 2013 ; Vol. 22, No. 1. pp. 52-62.
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