Understanding Participant Experiences: Reflections of a Novice Research Participant

Abstract

There is very little empirical work on the experiences research participants have engaging in qualitative inquiry; yet, qualitative researchers often think of themselves as forging critical relationships with their participants. It seems that perhaps the actual experiences of participants in the research process are being taken largely for granted. I want to problematize research participants being taken for granted. In this article, I analyze the existing literature and report on insights from my own experience as a participant in two interview studies. The article offers insights regarding participant experiences that are not well captured in the existing literature.

End-of-life care preferences for people with advanced cancer and their families in intensive care units: a systematic review

“…Of those studies examining patient and families preferences these could be aligned with some of the ten ACSQHC consensus statement essential elements (8) and are presented in Table 1. Most of the elicited preferences sit within the 'processes of care' category; and just two studies 23,31 in line with organisation prerequisites of education and training, evaluation, audit and feedback. Notably the organisational prerequisites of leadership and governance, supervision and support for interdisciplinary team members, and systems to support high-quality care were not evident.…”

“…While several studies (26-28) undertook interviews with patients to ascertain EOLC preferences these interviews were conducted prior to admission to an ICU. When a patient is in a stable condition, their preferences of EOLC are reported to be different to when their condition deteriorates and receiving care in ICU (31). Thus, it is unknown if these preferences reflect what patients want from EOLC in ICUs.…”

“…Recalling information after a stressful event or under grief may result in recall bias (33). Family carers reported that it would have been better to talk about their experiences when the actual events took place or during early stages of bereavement rather than recalling this information at a time after their patients' deaths (31). This may be because the carers may express their feelings and experiences of a live event more accurately without forgetting important information.…”

“…A Japanese study 31 utilising a cross-sectional anonymous questionnaire, found that families of patients with advanced cancer dying in ICU felt their concerns of poor physical care and symptom management for their loved one, was not managed well. This resulted in increased anxiety for the family (30).…”

Participants’ perspectives of weekly telephonic mood monitoring in South Africa: a feasibility study

“…Little empirical mixed-method research has been conducted to determine participants’ perspectives of weekly telephonic mood monitoring. From a utilitarian perspective, an understanding of participants’ expectations and motivation can arguably inform researchers on how best to implement telephonic mood monitoring [ 20 ].…”