My name is Charis Sass and I am a research assistant for the Family Caregiving of Older Persons in Southern Africa programme. Conducting interviews in a space in which there is an older person who is receiving care is tricky and there are many situations in which you, as the researcher, can feel as though you need to adjust and provide care to the ‘vulnerable’ participant, the person who is in pain. But how do I think about that? How am I understanding this need to ‘care for’ the participant? In considering this, I have taken the time to reflect on how I think about vulnerability and transitions and this blog shares some of this thinking process.
Entering into a home where there is an older person receiving care was quite challenging not only because I am a stranger, but because a lot of the times the older persons receiving care was in pain. In those instances, being the interviewer it can be challenging speaking to the older person in pain, you find yourself asking “is it okay for me to be here?”. If you decide to continue with the interview you then ask the next question “how do I care for my participant during this process?” I spoke to a participant who was experiencing severe pain throughout the interview and I had told her we can do it another time or come back, but she insisted I stay. I decided to go ahead and throughout that process I could physically see, with my eyes how she was moving around unable to at times complete an answer, due to being in pain.
In reflecting on some of these experiences, I considered how I thought about vulnerability. I was seeing their physical and individual needs first and not seeing their sense of personhood and individuality. It was particularly important for one woman, who talked to me and shared her life experiences, whilst I worried about whether she could manage the steps and was okay. I began to see that I was also drawing assumptions, judgements and framing my thinking about what I saw, not what I was hearing. In thinking about how I managed the environment in which someone is experiencing pain reveals I considered how I might have made the pain worse by not listening and hearing them, but by thinking I needed to comfort or assist the older person.
This does not just apply to physical pain but psychological pain as well. For example I was speaking with someone who has just had a stroke, and was experiencing changes in their everyday. They were now unable to go to the bathroom unassisted or dress themselves amongst other things. Changes in their physical capabilities was something that they grapple with in their daily lives and I felt as though asking them about it ran the risk of putting them in emotional distress. This process of extracting this data from them made me feel at times as if I was scraping and touching on psychological wounds that they experience. Also, understanding that for some participants not being able to do things for themselves made them feel helpless and hopeless and vulnerable and knowing that as you speak to them you are not sure how to at times remedy this feeling that they have.
But why was I focussing on the physical? I was seeing certain manifestations of vulnerability in particular ways which overshadowed other vulnerabilities that exist. I began to understand that I was ‘othering’ persons who were physically frail, whilst trying to be compassionate about their pain. I was wanting to ‘care for them’ and in the process I realised I myself was adopting a protective approach. In thinking through this, I began to consider the local, structural and historical factors that made them ‘vulnerable’ rather than seeing them as ‘vulnerable.’ In the example I described above, the male participant was having a long-standing dispute with a private pension company that was not releasing the funds he had saved up, this caused him great tension, this made him ‘vulnerable’.
For some participants who bring up the topic of death I was not prepared in how to deal with it. My thoughts went to their vulnerability and desperation. There have been multiple participants who have told me that they are “ready to die” or “wanting to die”. What do you say in response to that? How do we as researchers respond to these statements in a way that will aid them in this process? But why did I think I had to support them in ways that were different to what they were saying? Whilst I am still trying to work on how I make sense of this, I understand that there are different dimensions to this and different ways of looking at death. For many of the participants who say this, they feel as though they have lived their life and are ready to pass, whereas for others the emphasis is on ending the suffering they and their loved ones are going through at this stage in their life.
Whilst I still grapple with these issues, I engage in questions about whether my feelings and observations in the field and thinking of older persons as ‘vulnerable’ undermines other ways of hearing and seeing and understanding their experience. I did wonder that if I saw the same person with more support, in more comfort, through either material resources, medical devices or practical support, would I consider them vulnerable? It led me to think about what was creating or underlying the context of vulnerability rather than seeing the person as vulnerable.