Perceptions of Barriers to Patient Participation: Are They Due to Language, Culture, or Discrimination?

Previous research has shown that ethnic minority patients participate less during medical encounters than patients from majority populations. Given the positive outcomes of active patient participation, such as higher understanding of information and better treatment adherence, interventions are required to enhance ethnic minority patients' participation levels. However, little is known about what patients perceive as barriers hindering their participation. This study therefore aimed to explore differences in perceptions of barriers to patient participation among ethnic minority and ethnic majority patients in general practice. Eight focus-groups with Turkish-Dutch and indigenous Dutch participants were performed. A semi-structured topic-list concerning patients' enabling and predisposing factors to participate, and physicians' responses guided the interviews. Interviews were recorded, transcribed verbatim, and transcripts were analyzed using the constant comparison method described in Grounded Theory. Regarding Turkish-Dutch patients' enabling factors to participate, two perceptions of barriers were identified: (i) low Dutch language proficiency; (ii) a preference for an indirect communication style. Three perceptions of barriers to Turkish-Dutch patients' predisposition to participate were identified: (i) collectivistic values; (ii) power distance; (iii) uncertainty avoidance. Regarding doctors' responses, discrimination was identified among Turkish-Dutch patients as a perception of barrier to their patients' participation. None of these perceptions of barriers emerged among indigenous Dutch patients. This study contributes to our understanding of which perceptions of barriers might impede ethnic minority patients' level of patient participation. To enhance their participation, a combined intervention is needed, tackling the language barrier, raising awareness about cultural differences in values, and increasing doctors' cultural competencies to communicate adequately with ethnic minority patients.