Perceptions of the Chronic Disease Self-Management Program among Low Income African American Women with Lupus A Pilot Study Charmayne M. Dunlop-Thomas, MS, MPH Candidate

Statement of Problem Chronic Disease Self-Management Program Lupus Pilot Study Future Implications Introduction - Overview

Statement of Problem Lupus – Disease Burden –Morbidity –Quality of Life –Disability –Economy –Mortality

Statement of Problem MMWR (2002): Trends in Deaths for Lupus U.S Systemic lupus erythematosus death rates* among females, by age group & race - U.S

Lupus Interaction Liu & Davidson (2012) Nature Medicine

Concept of Self-Management “The ability to make wise choices to achieve a fruitful and joyous life.” --unknown author Illustration: Scottish Gov. Living Well Report

Chronic Disease Self-Management Program Program Intervention Group-based program Evidence-based intervention that improves the health of people with chronic diseases Versions –In-Person –Internet Illustration: African Health Magazine

What are you going to do? How much will you do? When will you do this? How often will you do the activity? Program Intervention Goal Setting and Action Planning

Stress Reduction Emotions Exercise Diet Medication Relaxation Communication Community Resources Program Intervention Topics

Pilot Study Researchers from Emory University want to learn if the chronic disease self- management program could help patients from the Grady Lupus Clinic to improve their quality of life. Determine efficacy in lupus patients Determine acceptance in our target population of AA women

Pilot Study Population

Pilot Study Recruitment African American woman Age 18 or older Diagnosed with Lupus At least 1 active Grady Lupus Clinic visit in the past 6 months Illustration: Hello Beautiful Newsletter

Pilot Study Recruitment

Pilot Study Data Collection Quantitative Measures: Self-Report pre/post surveys Healthcare system utilization Qualitative Measures

Pilot Study Qualitative Measures Focus Groups Supplemental Measures: Telephone Leader Interviews Post-Workshop Satisfaction Survey

Pilot Study Focus Groups Purpose: insight into acceptability, relevance, and usefulness Capturing: satisfaction; valid and applicable aspects to real world experiences

Pilot Study Focus Groups Distribution

Pilot Study Supplemental Measures Semi-Structured Leader Interviews Post-Workshop Surveys

Pilot Study Data Analysis Transcripts Thematic Analysis

Pilot Study Results Positive Experience “Just the motivation and the thrill to see a smile on people faces every week…enlightens me…we learn and interact with each other.”

Pilot Study Results Relevant & Relatable “…the action plan is my life now…” “The feedback was the best part. It’s nice to be able to talk to somebody who has [lupus]; somebody to relate to.”

Pilot Study Results New Skills “If I lay in bed all day I feel miserable, so I have to really set my mind to get up and do something…the action plan helped out with that.” “I also keep my medication list. For instance, I went to the doctor the other day and told the doctor I’m taking too many of this or that.”

Pilot Study Conclusions Education Social Support Skill Development

Promising results Further Research Study Public Awareness Future Implications

Special Acknowledgements Principle Investigator: Cristina Drenkard, MD, PhD CDSMP Leaders: Lynda Conner & Rosalyne King Fulton County Housing and Human Services, Office of Aging Advisors: Hannah Cooper, ScD and Theresa Brady, PhD Qual.Researchers: Terrika Barham, MPH and Natasha Brown, MPH