Qualitative perceptions of and preferences for the research process among patients with eating disorders

Abstract

Objective: Low participation and retention rates are persistent problems in eating disorder (ED) research. In order to improve the research process, this study used a qualitative approach to examine factors promoting and limiting research study participation among patients with EDs, and their preferences during research. Method: Five 90-min focus groups were conducted with adult women (N = 29) enrolled at a residential ED treatment facility. Facilitators asked a series of open-ended questions about participants' experiences, opinions, and preferences with regard to ED treatment research. Transcript analysis identified themes using a consensual qualitative research approach. Results: It was revealed that preventing others' suffering, improving ED treatment, and having low participant burden were major themes facilitating research participation. Major barriers to research participation included concern that research interferes with self-care/recovery, burdensome nature of study design, and demeanor of the researchers/institutions involved with the study. Patients believed that the format of research assessments could be improved by better assessing the nuances of ED behaviors, examining non-ED outcomes, and including more open-ended questions. Patients anticipated that challenges in recovery, feelings of guilt, and logistical barriers could interfere with their ability to complete follow-up research assessments. Discussion: Factors related to the recruitment process, assessment format, follow-up methods, and communication throughout the research process may need to be addressed to increase participation and retention rates. Findings indicate that recruitment strategies should include emphasizing the broader impact of the research and increasing sensitivity to the nature of patients with EDs experiences.