Today, for my first blog, I’d like to share with you the tale of my unexpected emotional journey. During my PhD project with carers of people living with dementia, I learned how it felt to do qualitative research with people who are living through some of their most difficult moments.
When I was very young – in PhD years anyway, and I was planning my project, I knew that some of the conversations I would have might be difficult, I knew that I needed to build rapport and connect with participants in my study, and I had read about how to end my data collection phase. And so, I carefully created a data management plan and composed an ethics application that detailed the ways in which I would signpost participants in distress, find ways of avoiding harm, and protecting their data. Then I wrote a fleeting nod of a statement that went along the lines of ensuring that I had my own support network should times get tough. This was perhaps the point at which I would change things, looking back.
Once the project was approved, I began to recruit participants, with my slightly simplistic idea that I would interview them, gather in-depth information about their lives, then at the pre-arranged endpoint of the data collection phase I’d wave cheerio with a folder full of data under my arm. The thing that I had completely failed to really reflect upon was not that the participants were all actual human beings but that I was too.
It seems almost funny to me now to look back and realise this incredible oversight – I could perhaps blame a little bit of it on trying to live up to the old school ‘proper researcher’ image in which objectivity and distance reigns supreme. Well, given that as a qualitative researcher I don’t actually subscribe to that narrative, I probably can’t realistically hide behind it. In reality, I was just naïve. And so, what actually happened during the course of collecting data and analysing it, with these real, live humans? Let me tell you.
Feelings of empathy help build a trusting connection with those you may be researching. But there can be an emotional toll which you should be prepared for when working with carers and people living with dementia.
From the outset, my first emotion was fear. A little bit of fear that I wouldn’t get enough good in-depth data to complete my project, but much more powerful was the fear of asking questions that would cause the participants pain or discomfort. It turned out that when a person is living with someone with a degenerative condition, even the very happiest of conversations can also be the very saddest, and I was fearful that my responses would somehow make the participants feel as though I was making some kind of judgement or a comparison with the stories that they told me. I still feel my heart squeeze with sadness when I read some parts of the transcripts, because the grief is palpable even through typed paper. Sometimes when I’m describing findings, I can feel my eyes start to well up because in its very essence, the end of life can be so difficult for those who bear witness, and for six months, that included me – even from the very periphery.
There was guilt. I felt guilty that I was, in some sense, using these participants to create a PhD that was primarily for my own benefit, although I remain hopeful that the outcomes could at some time affect positive change for future carers. There was guilt that sometimes participants would cry because of things I asked them, and there was guilt that I was not in their shoes, I could put that story down and carry on with my own life, they couldn’t. Perhaps I am a person predisposed to feeling guilty, but I was so grateful to the participants for spending some of their very limited free time talking to me, I managed to feel guilty about that as well. Gratitude was a massive part of my emotional ride, and I still feel extremely grateful for the participants who gave up their time to share their experiences with me, and for bringing humour into even the hardest subjects.
Then, there was anger! Even almost a year on from the first interviews, the injustice of some experiences the participants had still sends a shiver of frustration down my spine. Disbelief that the same problems I faced fifteen years ago in social care are still underfunded and unresolved. During these parts of interviews, I can hear myself being unnaturally quiet in the recordings, because I know I was concentrating hard on not interfering with the participant’s story, but at times my responses were far from objective. I was, from the start of my PhD vaguely aware that what had brought me to my research was a sense of wanting something better for the people that I was researching. My personal experiences of working in homecare hadn’t all been fantastic, and some part of me was probably on a mission to find a solution to all of social care’s woes. As I listened to the participant’s stories, the return of the frustration I felt as a social care worker was formidable and unexpected. I wanted to protect the participants, and I wanted to rescue them…but of course, that is not within my power (or funding!), and I wouldn’t have thought the people I spoke with would have welcomed a surprise rescuing anyway!
Toward the end of the project, some participants and I had been in touch regularly for over six months. The original plan was to end contact at that point with the agreement that I would be available for contact by email if participants wanted further information or to be signposted to support organisations, and we stuck with that plan.
What I absolutely did not anticipate was that I didn’t feel ready.
I felt as though there was no natural conclusion to the story that I was invested in, like someone had stolen the second half of my book. A little bit egocentric maybe, in that the story wasn’t mine in the first place, but I did, and do still care about what happens to the people who participated in my project, in the same way that I still think about people I supported many years ago and wonder where life took them. I am doing my best to accept that I can enjoy feeling curious, without necessarily having to satisfy that curiosity.
I am sure that in future projects I will appreciate having a deeper understanding of how research might feel for me, and approach new relationships with participants differently. I’ve reflected on how these experiences might form and shape how I develop my thesis and I want to embrace that influence without allowing it to completely overshadow my analysis and writing. I am learning that emotion is an important part of being a qualitative researcher and that rather than needing to suppress that, it might, in the end, bring depth to my work.
Marianne Cranwell
Author
Marianne Cranwell [1] is a PhD Candidate in the School of Education and Social Work & School of Health Sciences at the University of Dundee. When not wrangling her two children, Marianne is undertaking qualitative longitudinal research that explores the experiences of co-habiting informal carers of people living with dementia when homecare begins. This research is inspired by her time working in social care, and the families she met during this time where the emphasis was put on the service and the person living with dementia and not on their loved ones.