Friday, 14 January 2005 - 2:00 PM

This presentation is part of: Psychosocial Impact of Medical Illness and Disability

Seeking Representation in Qualitative Research: A Methods Challenge

Purpose: Qualitative research provides an invaluable venue for rich information, yet many qualitative research efforts do not hear all salient voices. It presents a challenge to seek views that are representative, not simply reflective, of the community. Community-based participatory research (CBPR), combined with ambitious and non-traditional recruitment techniques, offer those engaging in qualitative research an opportunity to achieve the representation more often associated with quantitative approaches, without sacrificing the richness characteristic of qualitative method. This study used CBPR to engage residents from 15 largely African American communities on Chicago’s South Side in order to partner with them in understanding underlying causes of health disparities related to breast cancer. Although white women are more likely to get breast cancer, African American women are more likely to develop breast cancer at a younger age and die from the disease. The formative phase of the study involved recruiting 250 adults for focus groups to hear their perspectives on breast cancer, health care access and quality, and community weaknesses and capacities. Their responses would inform later stages of the study. Given the diversity within these communities, it was essential to reach people who represent all possible backgrounds of all neighborhoods. Method: Although many research projects involving focus groups recruit participants using fairly prescribed, well-defined parameters, e.g. recruiting within organizations with which potential participants are affiliated, the scale of the current project and the desire for representation from each community made it necessary to not only use these traditional methods, but to go directly into the communities. Workers contacted key stakeholders, like local politicians, heads of community and health care organizations, and religious congregations. Researchers also went directly to people living in the targeted communities. Demographic information on respondents from each community was monitored throughout the recruitment process so that researchers could adjust recruitment techniques to target those who were underrepresented in our database. Results: The recruitment techniques yielded responses from over 1000 adults living in the 15 communities, allowing researchers to organize focus groups that were representative of the communities in which the participants resided. For example, in one of the communities, Greater Grand Crossing, women comprised 58% of the population, and 65% of the focus group participants for that community. Breakdown by age group and living status were also similar to those for the community. Additional demographic indicators for participants and the neighborhoods will be presented. Some challenges remained. For example, successfully recruiting Black Muslims proved difficult, as did enlisting members of the LGBT community. Policy and practice implications. This study promoted broad-based participation from adults of all ages, different genders, socioeconomic status and living arrangements. The focus on representation led to perspectives more diverse and therefore more meaningful for the enterprise than a more traditional recruitment approach would have allowed. Seeking community diversity within the context of CBPR is a powerful tool for enriching qualitative research findings. This is significant because social workers realize the importance of hearing all perspectives within a community, not just the ones that are convenient.

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