Coding interviews and identity: people with Alzheimer’s -2

Yesterday we left Celia thinking there was something else going on after her interviews with caregivers of people with Alzheimer’s disease. Something else was going on with me too, as my head was awash with images and sounds from ‘Brief Encounter.’ Celia Johnson was great, as was Trevor Howard, however I find the accents so awful, but love the way it told the story. A great archive review can be found here. If you want to know more have a look at these links.

So, back to our researcher, Celia. She states how uneasy and perplexed she was after the first interview and two more interviews followed fairly swiftly. After these she began coding, writing notes and impressions in the side margins of her transcripts, her unit of coding being each line.  Celia goes on to state that categories emerged but doesn’t really tell us how but it was at this point that she realised that her expected category about the ‘profoundness of placement of the Alzheimer’s person was not there with the richness she anticipated. The issue of decision making was not so very paramount in these interviews.’

Celia found herself drawn to other categories and says that after reading and re-reading the interviews she could ‘literally see the disquiet she had earlier experienced.’ It was how the interviewees commented that by the time of making a decision around care homes the person they once knew as husband, wife, mother or father ‘was gone.’ They were ‘strangers,’ and as one interviewee said ” M died a long time ago.” She reflected on the comments each had said; “different,” “gone,” “I don’t know but I know he’s not the same person!”

Identity loss was the central theme from the data

It was during these interviews that Celia’s focus changed from decision making to identity loss. Her key questions now included: ‘Tell em about your …before the onset of the disease; what was he/she like?’ ‘What were the first changes you noticed?’

She describes how she sat for ‘days on end’ with the transcribed interviews spread out before me, ‘absorbing them into my consciousness and letting them float about. I wrote memos on whatever struck my fancy, or as one professor called them, my “flights of fancy.” Sometimes writing several pages, at other times just a paragraph, recording whatever came into her head. Notes of all shapes and sizes began to pile up of non-linear thoughts and questions around identity:

  • how is identity perceived?
  • what constitutes identity to the average person?
  • why, if the person was ‘gone’ did the relatives hang on to the caregiving experience for so long?

Instead of making notes one day Celia decided to wade through the pile and placed them into developing categories:

  • silent partner, helper, and neighbours was abstracted to social relations
  • memory, clock and rituals were placed in temporality

Slowly, four major themes emerged around the identity loss process;

  1. Social relations
  2. Reciprocity
  3. Moral obligation
  4. Temporality

Celia describes how she set aside her other notes, talked to people working with Alzheimer’s disease and did more interviews; coding and writing memos as she went along.

“But most of all, I walked; I sat; I daydreamed.”

Participant observation: people with Alzheimer’s

I’m reading a fascinating chapter from The Qualitative Researcher’s Companion.  Originally I highlighted Chapter 15 due to its Grounded Theory approach, and, as I’m reading it I’m seeing things I haven’t noticed before. What’s standing out to me this time is how the author, Celia J Orona, arrived at her research topic. This is a difficult area to explain to research students. The common assumption is explained in this  Youtube video. Also, the majority of students think this should happen quickly, and, I particularly like the timeframe in Celia’s journey.

Celia was a PhD student who knew her study would ‘ focus on issues of the elderly’ and towards the end of her first year of her of doctoral study had a 6 week program placement as a team member in an Adult Day Health Center for physically and mentally impaired elderly. Her plan was to be a participant-observer of the interactions between staff and participants who attended the centre 2 days a week. She quite clearly states that beyond this thinking she ‘had no idea what the experience would yield.’

Her first experience with a participant came when approached by ‘Rose’ who introduced herself as a volunteer and offered her help and knowledge ‘it was her job to know where everything was.’ It turned out that Rose was no volunteer but a participant. Her surprise at Rose’s ability to carry on what was a logical conversation and see her rapid decline over the 6 weeks caused Celia to ask questions about Alzheimer’s and what it was like for their families.

Celia describes how she was exhausted every day and would ask herself: ‘What must it be like for the families who know that this situation can only worsen and from which there is but one escape – institutionalization?’

‘My dreams during this summer were dark. Although I do not recall any of those dreams specifically (never thinking that I might want to use them as data).’

Celia talked to the centre director and sought out library literature and says that she was ‘drawn more and more to the participants who were labelled as having Alzheimer’s disease and each day new questions emerged.’

  • ‘How did the caregiving relatives cope after working all day to come home and care for their loved ones?’
  • ‘Did they spend their evening conversing with the Alzheimer’s person?’
  • ‘How did they manage to make the decision to institutionalize their loved ones?’
  • ‘How did they dress them?’
  • ‘Was this an inherited disease?’

Six weeks later Celia states that she was ready for a vacation, troubled, fatigued and also intrigued. She had her dissertation topic.

The next question was how to narrow it down?

Initially she thought that an important aspect of the ‘caregiving experience would be the pain and anguish when the time came’ for the relative to be placed in care. She thought good questions would be to ask:

  • ‘Would there be other such momentous decisions?’
  • ‘How did relatives define profound decisions?

I think this relates to the identification of a substantive area – an area of interest. Celia’s study  has a population of caregivers to relatives with Alzheimer’s disease.  Her topic is the area of the population’s decisions to place their relatives with Alzheimer’s disease in care.

Celia designed a small pilot study and following the development of a proposal interviewed 5 of her own relatives who had cared for, or were caring for a person with Alzheimer’s disease. The interviews were between one and a half and 4 hours in length. When she got to what she thought was a critical question, sitting in a sitting room with one relative she says ‘I could hear in her voice and see in her body the tiredness which had accumulated from the many years of caring for her husband. When I asked, what was the process of coming to the decision to place your husband in a nursing home?’ She leaned forward:

                  “Decision? Decision? There was no decision. When it came time, I had no choice. it’s like falling in love, no one has to tell you. You know.”

Celia recalls how the relative (interviewee) described the fatigue, physical hardship and how once when her husband was kept in hospital how she looked forward to an undisturbed night’s sleep, not having to dress someone who fought her all the way, could eat a hot meal. She told Celia that she just knew the time had come, she was caring for a stranger.

At the time Celia sensed that there was something else that she was hearing and she left perplexed and uneasy. She likened it to someone hearing a strange noise and becoming alert.  She tells us how she wrote up her notes, listened to the interview tapes and then did 2 further interviews.

I’m really glad to be reading this chapter again as I’ve always found Grounded Theory so confusing. Celia’s account personalised the experience of her topic selection, sets it within a timeframe, and gives us insight into her thinking about her experience.

 What happens when Celia begins her coding  – read more in Learning adventure – 14.