Some memorable participants

Posted by Rachel Stocker

During the last year (which comprised the second year of my PhD) I have embarked upon a roller-coaster of emotions. Not only as a consequence of the usual trials of a PhD journey, but through data collection. I’m primarily a qualitative researcher, and my study involves interviewing people with heart failure, and their carers, to discuss their prognosis.

OK, I thought, no problem. The only issue I would need to consider would be if they found the topic upsetting, and I prepared myself for that possibility and the resources I would need to access. What I wasn’t prepared for was the sheer diversity of participants, and the depth which I would see their lives.

I have been welcomed into all my participant’s homes and shown, with open arms, how they live. One particular interview which remains firmly in my memory was with a gentleman who I had been advised had severe (physical) difficulties with verbal communication and whose wife could not participate due to similar, cognitive communication, difficulties. 

A nice cup of tea and a biscuit

Oh dear – this is going to be challenging, I thought. I wasn’t really looking forward to the interview. I knew there would be issues with communication, and I wondered how best to sensitively conduct the interview. Upon arrival, I was welcomed as an old friend and given endless cups of tea and home-made scones (fruit AND cheese!). I was taken by the hand and shown round the couple’s quaint bungalow, containing endless self-made paintings and artwork. I was told about their families and their service in WWII. The interview went well and I left feeling happy, with a twinge of sadness at the parts of their lives they had lost. 

Another memorable participant told me about her life, her late husband, and her parents (mother French, father English – she spoke in a perfect French accent despite living in England all her life). She lived with her son, a very personable, jolly fella who joked about her stubbornness. She visited the local hospice regularly to socialise with “other people my own age”, play dominos, and enjoy lunch. (Her son interjected at this point to say that she comes back three sheets to the wind as they all have an ‘aperitif’ beforehand). She did not offer any other reason for attending the hospice and did not think it was related to her health at all. She died three months later, peacefully in her sleep.

I’m conducting six-month follow-up interviews with participants (where possible, however heart failure is a cruel disease), so I get to return to their homes and speak to them again. I noticed one lady was looking much better than when I saw her six months ago, and told her. Her husband said that she had been looking forward to my visit for the past few days and seeing me perked her up. I re-interviewed them like old friends, with their dog sat on my knee – turning my black trousers white with his fur but I didn’t mind at all - whilst I supped my tea and ate two of the five assorted biscuits arranged on the plate.

Interviewing my participants has illustrated to me that there’s much more to life than research (and indeed, living with heart failure) and reminded me of the fine line between living and dying.