OBJECTIVES: Collecting information during qualitative interviews that authentically reflects patients’ and caregivers’ experience with disease and treatment is critical in healthcare decision making but may be arduous due to the artificial relationship between a participant and the interviewer. The aim of this study is to present methods of establishing trusting information exchange with the “gatekeepers” of the information in qualitative data collection.

METHODS: Using a combination of patient-centered interviewing approaches, grounded theory data collection methods and ethnographic skills from anthropology, we systematically review inform consent forms (ICFs) and interview scripts with patients and caregivers to identify elements and techniques that allow to collect rich, full authentic translation of the participant experience.

RESULTS: Quality and clarity of the ICF and a careful review of it with the participant, including clarifying study objectives and allowing time for questions, result in establishing a trusting relationship with the participant. Once this trusting relationship has been established, profound details of the lived experience of caregivers and patients are shared and further explored. Additionally, interviewer observation skills of interpreting non-verbal cues such as proxemics, gestures and eye contact further help to gather rich data, as well as active listening, reformulation, incorporating open-ended questions and having an empathic approach.

CONCLUSIONS: To reduce the risk of limited or restrictive data in qualitative interviews, it is very important to establish trusting relationships early in the interview process, prior to engaging in information sharing. This study identified specific skills and methods, such as establishing rapport, having a comprehensive review of qualitative study objectives and thorough review of consent processes that are required to gather this thorough and authentic information from patients and caregivers’ interviews. These methods can be used to enhance the patient experience during sensitive interviews as well as achieve scientific rigor while collecting qualitative data.