190 ‘Timelining’ treatment trajectories during interviews about shared decision making with ethnic minorities in oncology: a reflection on the method

Abstract

Introduction Limited research is available on ethnic minority patients’ experiences with shared decision making (SDM) in oncology. In the Netherlands, they are expected to increasingly make use of oncological care and face treatment decisions for which SDM is appropriate. SDM has been criticized for treating encounters independently and insufficiently taking influential factors outside the consultation room into account. The aim of this study was to assess the use of a combination of interviewing with drawing timelines (timelining) to gain insight in ethnic minorities’ oncological treatment trajectories. Methods We interviewed patients (n=22) and relatives (n=11) with a Moroccan, Turkish and Surinamese Hindustani background, diagnosed with various types of cancer in different stages of their treatment trajectory, about decision-making. We combined interviewing with timelining. Results During the interview, timelines functioned as a memory aid for the researcher and enabled her to familiarize herself with the patients’ trajectories. Timelines helped respondents to remember and focus on decisional moments and to ‘see’ their treatment trajectory through a lens of decision-making. This can intensify respondents’ emotions, but the visualization offers at the same time distraction as respondents could look at their experiences from a distance. As the timelines developed, they became an actant to which respondents pointed and enabled the researcher to ask transcending questions about decision-making in the context of the whole treatment trajectory. Discussion Through timelining we captured multiple treatment decisions and considered decision- making as a longitudinal process during which patients’ self-direction could change. Timelining should be adapted to individual patients regarding how much is drawn or written. Conclusion(s) Timelining made decision-making more tangible for respondents and is a promising method to incorporate ethnic minorities’ experience into care path design to improve SDM.

Authors 3

1. Roukayya Oueslati Aachen Department of Ethics and Law of Health Care

   Leiden University Medical Center · The Hague University of Applied Sciences

   Affiliation as printed

   Department of Ethics and Law of Health Care, Leiden University Medical Center, Leiden, The Netherlands

   Department of Nursing, The Hague University of Applied Sciences, The Hague, The Netherlands

2. Anne Margarethe Stiggelbout Aachen Medical Decision Making Department of Biomedical Data Sciences

   Leiden University Medical Center · Erasmus University Rotterdam

   Affiliation as printed

   Erasmus School of Health Policy and Management, Erasmus University Rotterdam, The Netherlands

   Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands

3. Dorothea Petra Touwen Aachen Department of Ethics and Law of Health Care

   Leiden University Medical Center

   Affiliation as printed

   Department of Ethics and Law of Health Care, Leiden University Medical Center, Leiden, The Netherlands