Wait, Won't, Want: Barriers to health care as perceived by medically and socially disenfranchised communities

Background/Significance

While it has been recognized that there are patient-level and system-level factors that contribute to healthcare disparities, much of the effort to date has been to focus on the composition of the healthcare workforce, the cultural competence of providers, and the role of community participation and mobilization in promoting health, little attention has been paid to the communication between healthcare providers and members of medically and socially disenfranchised communities.

Objective/Purpose

The purpose of this project was to identify themes in communications with healthcare providers that individuals from medically and socially disenfranchised groups perceive as preventing them from getting what they need to manage their health.

Methods

A participative inquiry approach used focus groups from the local community from medically and socially disenfranchised groups (African-American, Hispanic, lesbian/gay/bisexual/transgender [LGBT]), and Russian immigrant communities) to identify common themes among their experiences with healthcare providers. Participants were recruited using flyers, internet posts and ads in all local buses. The sessions were digitally recorded and transcribed. Data were analyzed using Atlas.ti by assigning in-vivo codes to the words of respondents by three researchers, independently. The coding was merged and reconciled. The in-vivo codes were grouped under more abstract (axial) codes by the patterns or themes that emerged from comparing shared characteristics and meanings. The themes were then validated in meetings with community groups.

Results

Three major themes emerged consistently, in all four communities and across all focus groups. Themes are “wait,” “won't,” and “want.” Examples of “wait” included waiting for an appointment, the provider, and test results. “Won't” included won't take a medication that makes me sick and won't go to a provider or hospital that doesn't respect me or ignores what I have to say. “Want” included a providers who “knows” them and their situation, takes their time (not rushed), who listen, enter into a human relationship, and the right medication (one that works for them). At the system level, “want” includes simple, understandable and affordable healthcare/insurance for all.

Conclusion/Discussion

Participants identified that waiting is a major barrier that interferes with or prevents getting what they need to manage their health. Further, participants report foregoing health care (“won't”) instead of returning to providers or hospitals whom they perceive treat them with other than a reciprocal “human” relationship. Participants want providers to listen to their stories, especially with regards to participants knowing their own bodies and histories.