Being a researcher and a relative: reflections on supporting a family member living in a care home

This blog post has been five years in the making.

I first attempted to write about my experiences of supporting my nan, Ann, back in 2018. At the time, she had recently fallen and fractured her hip. And, although she had undergone surgery, she was struggling to regain the ability to walk.

Prior to her fall, nan had been living with a diagnosis of Alzheimer’s disease and vascular dementia for two years. Although she needed increasing levels support at home (for example with changing beds and paying bills), she was living well, almost independently. Only the day before her fall she had walked over a mile into and around the local town and back home.

At the time of nan’s fall, I was carrying out interviews with care home staff as part of the first phase of data collection for my PhD, which explored the ways staff decided whether to transfer residents to hospital. At this time, I was confident that nan would return home. Perhaps my assumption was naïve, or perhaps it was only unrealistic in the context of the rising pressures in hospitals.

One year after nan’s fall, I again sat down to write in an attempt to reflect, but I could not fully articulate what I wanted to say. It felt like so much had happened that I didn’t know where to begin or where to focus. Nan’s journey had taken unexpected turns. She had been sent to a Discharge to Assess (D2A) unit in a care home, discharged home with a package of care, and then readmitted to hospital due to a medical complication. She then made the full journey again – to the D2A unit, home and back to hospital due to different medical complications. By then, I was undertaking the second, ethnographic phase of data collection for my PhD. It was a surreal experience, spending extended periods of time in care homes as a researcher, whilst coming to realise that my own nan needed the level care a residential facility could provide.

After many difficult conversations, nan moved into a care home in 2019. During this time, I found that my focus as a researcher shifted. I went from identifying closely with the care staff (due to my previous work in care roles), to positioning myself as a researcher, to being a relative of a person living in care home. In my fieldwork, I saw, first-hand, examples of wonderful care. Even so, having to trust other people to care for nan, knowing she was not well enough to report poor care, was frightening. Occasionally, albeit infrequently, I saw things during fieldwork that I felt less comfortable with. Often these were small instances that I may not have noticed if I wasn’t a relative, such as staff entering residents’ rooms without knocking. But viewing interactions through the lens of a relative led me to wonder how my nan might feel if she were to receive the care I was observing, and how I might feel to witness those experiences.

Nan lived in her care home until her death in August 2020. As I approached the end of my PhD, her health deteriorated suddenly. At the time I was writing up my thesis, the central argument of which was that, when deciding whether or not to transfer a resident to hospital, care home staff ‘weigh up’ different forms of risk. This includes risks to residents; to staff and their social relationships with others; to care homes; and to wider health and social care services.

Having spent the previous two years studying hospital transfers from care homes, it felt bittersweet to be asked, as nan’s Power of Attorney for Health and Welfare, whether I felt nan should be transferred to hospital. On one hand, I felt immensely sad because I knew in my heart that this was the end. On the other hand, I felt fortunate to be unusually informed and prepared about the need to ‘weigh up’ the different options available. After discussions with family, the care home manager and GP, we opted for her not to go to hospital and she died in her care home two days later.

We are now approaching three years since nan died. I often reflect on her journey through the health and care sectors, and how it seemed to coincide with the research I was undertaking. I also reflect on that decision. When I wrote my thesis, I understood the idea that staff weigh up several forms of risk. But until I had to make that decision myself I had not fully understood how ‘weighty’ those decisions could be.  

I am sure many researchers engage with the topics they study on both personal and professional levels. On a personal level, writing this blog has provided an opportunity to reflect on an important chapter of my life. On a professional level, I hope that this blog encourages conversations amongst care home researchers about the ways personal and professional experiences of care and care homes can interact and influence once another.

About the author

Dr Fawn Harrad-Hyde is a LOROS Research Associate at the University of Leicester, with an interest in care homes research. In 2021 she completed her PhD, which explored the ways care home staff decide whether (or not) to transfer residents to hospital. Fawn was recently awarded a Mildred Blaxter Fellowship from the Foundation for the Sociology of Health and Illness, which she will use to extend her PhD work by exploring the experiences of ambulance staff when attending call-outs in care homes.

Twitter: @FawnHarradHyde