Understanding the lived experience of women cancer carers

1
Understanding the lived experience of women
cancer carers

• Sue Yates

2
Influences

• The research question
• Nursing
• Feminism
• Philosophy

3
Background to the study

• Recognition that informal cancer carers have
  psychological needs of their own (DOH, 1995,
  2000) Family members described as co-sufferers
  (Bowman et al, 2003)
• Government strategy Caring for Carers (DOH,
  1999)
• Quality Standards for Supporting Carers
  (DOH,2000)
• Shift in rhetoric from the focus of care in the
  community to care by the community
• Cancer patients living longer, carers may live
  with the cancer patient for many years
• Home is most preferred place of death

4
Women carers

• Carers predominantly women aged over 50 (DOH
  1999, 2000)
• Women cancer carers provide more hands on care,
  more uncertainty of outcome, time scale and
  physical impairment involved (Morris and Thomas,
  2001)
• Reported that women carers more likely to be
  depressed, display more signs of burnout than
  male counterparts (Keller and Heinrich,1999Beaver
  et al, 1999)
• Research into the needs of women carers is rare
  research usually involves joint interviewing
  (Morris, 2001)

5
Recruitment

• Purposive sample of 18 women, in long-term
  relationship with partner who has had, or is
  receiving palliative treatment for cancer
• Recruited from Cancer Centre outpatients
  department
• All participants interviewed in own home

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Potential difficulties

• Ethical approval
• May not want to invest time in issues which will
  not benefit them directly
• May be too tired, distressed or over-whelmed by
  their day-to day experiences
• Attrition in cancer research a common problem
• May be reluctant to criticise services
• Gate-keeping issues
• Being an outsider on the inside
• Previous research problems with solo
  interviewing (Morris, 2001)

7
Methodology

• Nursings adoption of phenomenology
• Rejection of Husserls descriptive phenomenology,
  subject-object bracketing
• Heidegger the primacy of ontological
  understanding-what it means to be a person
• We make sense of the world through our existence
  within it- the lived experience
• Development of interpretive hermeneutic
  phenomenology

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Method

• Qualitative. Longitudinal study data collection
  over 24 months, tracing the development of
  experiences over time-not a single snapshot.
• Interview-diary-interview method
• A minimum of 2x unstructured solo interviews
  (guided conversations) plus repeated interactions
  with informants, maintaining telephone contact
• In total, 35 interviews and 16 diaries

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Establishing trustworthiness

• Reflexive journaldescribing, explaining the
  whole process
• Importance of self and background in the
  production of knowledge integral to hermeneutic
  phenomenology and feminism
• Participant validation the hermeneutic circle
• Prolonged involvement
• Peer de-briefing
• Mixed methods

10
Using Diaries in Research

• Unstructured diary material personal document
  constructing a picture of the womans perception
  of reality, reflexive element stressed.
• Strong tradition of autobiographical and diary
  based research within feminist circles
• Diary kept after first interview duration one
  month to three months, written discontinuously
• Diary retrieval followed up by interview either
  face-to-face or by telephone gives diarists the
  opportunity to reflect and participate actively
  in the research process

11

• Diary Linda1 Much better day today, Bobs
  pain is much better. The nurses came this morning
  and gave him a wash and made him comfortable.
  When they arrived, I had been up most of the
  night and was in a bit of a state. Afterwards, he
  looked so settled, I could have kissed them .We
  sat and had a cup of tea and I knew they were
  busy but I didnt want them to go because its
  the only time I can really let go, when they are
  here. I feel safe when they are here

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Data analysis

• One of the most paralysing moments in conducting
  qualitative research Sandelowski (1995)
• Van Manens(1990) hermeneutic approach to
  thematic data analysis
• 1 holistic approach for fundamental meaning
  
• 2 selective highlighting of essential statements
• 3 line-by-line (detailed reading)
• 4 Themes re-visited with the participants

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Thematic categories

• 10 thematic categories with 50 sub-sumed themes
• Restricted life-world
• Living with uncertainty and fear
• Seeking and giving support
• Struggling with physical changes
• Role and relationship changes
• Time
• The battle for control
• Peaks and troughs-crises and normalising
• Alienation from reality
• Light at the end of the tunnel

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Lived body

• Strain and drain
• Weariness and fatigue
• Heightened awareness of bodily functions
• Preparation and education
• Physical adaptation
• Feeling different
• Fear of death

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Lived body

• Mary 2 Ive had to deal with things I never
  thought I would have to do, not for my husband
  like cleaning him up. I dont mind, its just
  that I never expected it so soon and Im not a
  nurse am I? They (the nurses) think you can just
  do these things but you cant. It makes me sound
  terrible, but I just found all that messy stuff
  really hard. You never get used to it, but you
  just have to do it. Its really hard, it wears
  you down

16
Lived time

• Frustration and relief
• Constant uncertainty
• Watching for signs
• Running out of time sense of panic
• Pace slows down doing things slowly
• Reminiscing the past
• Looking forward fear of the future

17
Lived time

• Mary1Well, I watch him all the time, of course
  I do, watching for a sign of him going
  downhill..I know that we dont have a future
  together, so I wish I could stop the clock and
  keep things as they are, as ill as he is Its
  the future I dread, not knowing if I will be able
  to look after him at the end and what it will be
  like. I havent got a clue about whats going to
  happen and it really worries me. I dont want to
  let him down

18

• Jane1 I think he wants to be at home, and he
  expects me to look after him, we havent
  discussed it but I know its what he wants and
  the thought of it scares me half to death. To be
  honest, I would feel happier if he was in
  hospital or the hospice, I just dont think I
  will be able to do it I ll have to cope, I
  know, but I just wish it was all over. The last
  year has really taken its toll on both of us. I
  think we have both just had enough, were just
  worn out with it and I think weve lost the
  battle