Screening is a priority in primary care and women’s health, and increasingly used for intimate partner violence. Integrating such routine screening into primary care screening may be challenging for clinicians. Human-centered design (HCD) is a participatory process emphasizing stakeholder input and is used increasingly in health care. A growing body of literature has examined the science of patient and community engagement in health research, yet few qualitative studies investigate how participants recruited to collaborate in designing screening tools perceive HCD processes. This study examined participants’ perceptions of an HCD process used as an engagement tool to inform the development of a women’s health screening tool.
Qualitative study using data collected from community members and providers and staff recruited through a southern Appalachian medical education center and network of family medicine clinics and in the surrounding community. Using opportunistic and key informant sampling, study participants (some of whom were also intimate partner violence survivors) were part of an earlier HCD process undertaken to redesign a women’s health/primary care screening tool and were invited to be interviewed about their perceptions of and experiences in the HCD process. Interviews were conducted using a semistructured guide. Interviews were audio-recorded, transcribed, hand-coded, and analyzed using modified grounded theory.
All of the participants reported that they valued the opportunity to be part of the HCD process; however, they reported divergent views of the process itself. Some found it easy to engage, whereas others found it confusing or embarrassing. All valued the opportunity to be part of determining the best process for screening, yet concerns were expressed about access to and full participation in the process. Community members reported more concerns; providers and staff reported fewer concerns about their own involvement and participation, although some expressed doubts about community members’ full engagement.
Although a promising option and valuable process, the HCD process was not equally comfortable for or accessible to all participants. Community engagement beyond the clinical team is important for improving practices in health screening and health care, but it must be undertaken thoughtfully.
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