I cannot remember how many research studies I have been involved in over the past 17 years. This is not because I am an established researcher – on the contrary! Rather, it is because my daughter has Down syndrome and even before she could walk or talk, it has been important to our family that we volunteer our time to support researchers who want to improve the lives of disabled people and their families. Therefore, with our parental consent, and her consent since being able to consent herself, my daughter has been observed in multiple studies, such as watching her engage in play or daily tasks, tracking her eye movements when interacting with a computer programme or monitoring her brain waves while watching moving images. I have completed endless surveys and interviews, attended focus groups, and discussed our experiences at length, retelling our ‘story’. I was a mother of a disabled child and a research participant before I started my own ‘becoming-researcher’ journey, and my experiences as parent-participant implicitly shaped my approach to undertaking research throughout. My identities as a doctoral student, research participant and mother are therefore interwoven and cannot be disambiguated (Schriever, 2021). This blog post considers what emerged through the intersection of being a mother, research participant and new doctoral researcher, as my personal experiences as a research participant influenced many of the decisions I took as a doctoral researcher.
‘I have completed endless surveys and interviews, attended focus groups, and discussed our experiences at length, retelling our “story”.’
There is little existing research to draw on that specifically focuses on the experiences participants have of engaging in research and that ‘most of what we know about research participant experience comes from the researchers themselves checking with participants’ (Dennis, 2014, p. 402). While I recognise that my experiences as a participant are just my own – and that neither disabled children nor their parents are a homogeneous group who encounter research participation the same way – I believe that my experiences as both a participant and researcher enabled me to explore different ways of approaching my doctoral studies.
From the outset of my PhD research, I wanted to clearly demonstrate that I would commit time and effort to be responsive and supportive to participants throughout the process, ensuring that the research design recognised the specific demands on parents’ lives. I designed a seven-point commitment incorporated within the participant consent form, which we both signed, which set out my commitment to those who were taking part in the inquiry.
It was important to incorporate opportunities for participants to reflect on their engagement in the study and to be able to change their minds or expand on their answers after they had met with me. Therefore, the inquiry has been designed as an ongoing conversation (Bojesen, 2019). The process started with a phone call where I introduced myself, explained my motivation for undertaking research, and invited parents to ask any questions. Next, they were invited to bring a ‘conversation starter’ to our first meeting, from which the conversation flowed; subsequent meetings also started with their reflections. On the morning of every meeting, I contacted them to ensure that the date, time and location were still suitable, remaining flexible about when and where we would meet.
The inquiry was designed to be responsive and flexible, and having explained this in the initial phone call, parents were able to make suggestions about how they engaged in the process. For example, one parent commented that they wanted to hear what the other parents had been discussing, so with everyone’s agreement and assured anonymity, I shared a collated document of initial analysis, designed as a ‘choose your own adventure’ rhizomatic document, which invited further reflections on conversations that had taken place.
As I approach the writing and dissemination of the research inquiry, I continue to engage with each of the parents to gather their input to ongoing theorising and how their words and stories are being included. When recently invited to present my research-in-progress to the Department for Education, I asked each of the parents to share what they thought the key messages from our conversations were, which provided the scaffolding for the presentation. I shared the presentation in advance and provided feedback about the event afterwards.
As Schriever (2021, p. 1964) describes, there are opportunities to embrace the identities of mother and doctoral student, to bring ‘mothering into academic spaces’ and vice versa. I hope that this blog post about my experience of bringing my experiences as a mother who has been a serial research participant demonstrates how this has benefited the inquiry and the parents who have kindly given up their time for this developing research.
Sharon Smith is the BERA Doctoral Fellow 2019.
Bojesen, E. (2019). Conversation as educational research. Educational Philosophy and Theory, 51(6), 650–659. https://doi.org/10.1080/00131857.2018.1508995
Dennis, B. K. (2014). Understanding participant experiences: Reflections of a novice research participant. International Journal of Qualitative Methods, 13, 395–410. https://doi.org/10.1177/160940691401300121
Schriever, V. L. (2021). Merging motherhood and doctoral studies: An autoethnography of imperfectly weaving identities. The Qualitative Report, 26(6), 1962–1973. https://doi.org/10.46743/2160-3715/2021.4787