Jane Hopkinson PhD, RGN

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Facilitating patient choice Lessons from the
Macmillan Weight and Eating Studies

• Jane Hopkinson PhD, RGN
• Macmillan Post Doctoral Fellow, School of Health
  Sciences,
• University of Southampton

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A history of patient choice

• ? NHS Plan (2000)
• ? Building on the Best (2003)
• ? Our Health, Our Care, Our Say (2006)
• ? Cancer Reform Strategy (2007)
• ? End of Life Care Strategy (2008)

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A history of patient choice
? Choice of healthcare provider ? Choice of
treatment
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Gordon Brown 2008
real change will come from taking choice to a
new level, moving beyond people seen as simply
consumers and empowering them to become genuine
partners in their care.
Brown G (2008) Speech on the National Health
Service at Kings College, London, 7 January 2008.
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End of Life Care Strategy Promoting high quality
care for all adults at the end of life (July 2008)

• People need to be given the opportunity to
  consider what care they wish to receive, based on
  the best available information about what may lie
  ahead of them and what services are available.

What the End of Life Care Strategy means for
patients and carers (July 2008)

• Your services will be informed by the experience
  of others who have been in a similar situation to
  you.
• You will have access to appropriate advice and
  support for your carers.

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How?

• ? Prognostication is difficult
• ? Preferences change
• ? Initiating discussion can be challenging

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Macmillan weight and eating studies

• Helping people with advanced cancer live with
  weight loss and change in eating habits

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Medical Research Council Health Services and
Public Health Record Board. A framework for
development and evaluation of RCTs for complex
interventions to improve health. 2000. London,
Medical Research Council.
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• Weight loss and anorexia are problems for
• clinicians
• patients
• families

Hopkinson J.B. et al. (2006) The prevalence of
concern about weight loss and change in eating
habits in
people with advanced cancer. JPSM. 32(4)
322-331. Hopkinson J.B. et al. (2006) The
experience of weight loss in people with advanced
cancer. JAN. 54(3) 304-312. Hopkinson J.B. (2007)
How people with advanced cancer manage change in
eating habits. JAN. 59(5) 454-462.
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Involuntary weight loss a problem for patients
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A study question

• How do people with advanced cancer manage weight
  loss and change in eating habits?

Hopkinson J.B. (2007) How people with advanced
cancer manage change in eating habits. Journal of
Advanced Nursing. 59(5) 454-462.
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What do you eat?
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What does someone with cachexia eat?
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Hopkinson J.B. MacDonald J. Wright D.N.M.
Corner J.L. (2006) The prevalence of concern
about weight loss and change in eating habits in
people with advanced cancer. Journal of Pain and
Symptom Management. 32(4) 322-331
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Why is change in food intake troubling?
Mum, will go through, would you like this? Or
would you like that? The end product is that it
is even harder for me to try and stomach
something. (Emma)
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• How can we help patients with advanced cancer
  live with weight loss and poor appetite?

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Macmillan Approach to Weight and Eating (MAWE)
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Humanistic nursing theory

• Helping people help themselves by enhancing
  choices/control

Paterson and Zderad (1976) Humanistic Nursing
Theory. Wiley. New York
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EATING WELL
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Healthy eating messages
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Healthy eating messages
Im not eating vegetables, Im not eating fruit.
It scares me.. I feel that, as well as the
cancer, Im abusing my body. (Stella)
Hopkinson J.B. Corner J.L. (2006) Helping
patients with advanced cancer live with concerns
about eating A challenge for palliative care
professionals. Journal of Pain and Symptom
Management. 31 (4) 293-305.
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FACILITATING SELF-MANAGEMENT
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A model of self-action
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Healthy eating
I ate an apple today.First one for ages. I
managed it! (Craig)
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Eating well
I have gone on to tinned fruit, which is easy. I
like blackberry and apples.I can eat a whole
bowl full of that. (Craig)
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Changing identity
To be honest I've got to the stage that I would
rather (eat alone) because they are all tucking
away at full sized meals. The size I had before
and I am there with this 3 year olds portion They
were getting the full meal into the stomach and I
was still messing around with this 3 year olds
meal. It was embarrassing in a way. (Frank)
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The PRO approach to story telling
"The PRO-approach refers to the sequence in which
the story is usually presented to the client.
First the story describes the client-matched
Problem. Second, it portrays how the character
accesses appropriate Resources for solving the
Problem, and, third, the story presents a
successful Outcome".
Burns. (2001) 1001 Healing Stories using
metaphors in therapy. Wiley. New York.
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Phase III Exploratory trial
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Qualitative analysis
MAWE supports ?Eating well Energy dense
intake Change in pattern of food
intake Fortification of foods MAWE group
n17/23 Control group n5/24 ?Self-manageme
nt Making change or planning to make
change MAWE group n20/24 Control group
n12/25
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Involuntary weight loss a problem for families
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Why is change in food intake troubling?
I think we can, from a diet point of view,
strengthen her. I can't help thinking she has had
such a rapid weight loss in a few months really
we need to stop that and try to put some of that
weight back. I don't know how much, Im out of my
depth here. (Paulas husband)
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Carers can support self-management
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Carers can obstruct self-management
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You must eat or youll die
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Conflict
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Family focused care?
Can we facilitate choice using a family focused
model of care?
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