What kinds of support services do minority women living with heart disease want, or say they need? How best can organizations like IQ Solutions and WomenHeart serve these women as they seek to survive and thrive despite their diagnoses?
Recently, IQ Solutions partnered with WomenHeart: The National Coalition for Women with Heart Disease on several survey studies related to the knowledge and support preferences of women living with heart failure and atrial fibrillation. An overwhelming proportion of the women who responded to these studies were Caucasian, but these conditions disproportionately affect women of color.
In response to this potential bias, IQ Solutions designed a study and engaged in intensive outreach efforts to reach a large group of minority women living with heart disease. The resulting survey was offered in English and Spanish, and administered according to respondent preference (i.e., either self-administered online or interview-style via telephone by a bilingual health resource specialist). A total of 514 non-Caucasian women from 46 states completed the survey.
The results, published in the Journal of Health Disparities Research and Practice, point to initial ways program developers can design meaningful customized interventions based on the patient preferences revealed in the study. Key findings indicated:
Eighty percent of respondents were interested in attending support groups (among those currently not in a support group).
Indigenous and Hispanic respondents showed greatest interest in support groups.
Among WomenHeart services, respondents were most interested in online message services.
Among new services, respondents were most interested in a support group with a medical expert facilitator.
Respondents with tachycardia wanted a support group with others with the same condition.
Respondents with cardiomyopathy preferred to meet most frequently.
Respondents most preferred a monthly support group with flexible membership.
Community venues (church, community center, school, office building) were the most popular locations for support groups.
Indigenous respondents had the lowest heart disease knowledge and self-efficacy (confidence) levels.
Indigenous respondents were most likely to prefer a support group with women of their own race.
Indigenous respondents wished to meet with their groups most frequently.
Multiracial respondents were more likely never to have been told about clinical trials.
Hispanic respondents had the least social support.
Two-thirds of respondents had never attended a cardiac rehabilitation program.
Of those who had attended a cardiac rehabilitation program, the overwhelming majority were satisfied with their programs.
Eighty-five percent of respondents had never participated in a clinical trial but reported enthusiasm in exploring clinical trial opportunities.
Armed with the insights and preferences from the women they are seeking to support, WomenHeart has already begun developing support services in direct response to this study’s informative results.