The patient experience of MSCC

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The patient experience of MSCC

• Clare Warnock
• Practice development sister
• WPH

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Patients experiences of SCC

• Wide range of challenges associated with SCC
• Muscle weakness, loss of mobility, impaired skin
  sensation, pain, incontinence, sexual dysfunction
• Sudden loss of independence
• Awareness of poor prognosis and implications of a
  life limiting illness
• Unlike spinal injury patients they have limited
  time and opportunity to adapt
• What is it like to experience this?

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What is the patients perspective?

• Limited research exploring the patients
  perspective
• Study currently in progress at WPH
• Two studies suggests some intriguing findings
  which resonate with our experiences
• Interviews with patients at various time points
  following their diagnosis with SCC (Eva)
• Interviews immediately post diagnosis and
  treatment (local study)
• Identified some of the challenges patients
  experience
• Provides insight into ways patients with SCC cope
  

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Difficulties described by patients

• Patients expressed sorrow, frustration and regret
  about multiple losses
• Their body had become unfamiliar and
  unpredictable
• Previous taken for granted activities were no
  longer straightforward
• Not being able to walk was a main concern
• Loss of independence
• Needing help for so many ADLs
• Not being able to do the things you used to do
• Uncertainty about future mobility
• Will it improve, how much will I be able to do

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Difficulties described by patients

• Getting home
• Will I get there/how will I manage
• Practical adaptations that have to be made
• Impact on family and family life
• Needing support from outside agencies
• what support is there, will I get it, what is the
  least amount I can get away with
• Fears that others would treat them differently
  due to their cancer AND their disability

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Challenges faced

• Having cancer and a poor prognosis
• Changing roles and identity
• Challenged by limited mobility and loss of
  independence
• How will I cope with being in the house more
  (boredom, activities, what will I do with my
  time)
• How much of previous life outside the home will I
  be able to continue (e.g. going out for meals,
  holidays, caravan, social club, pub, work)

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How did patients manage these concerns and fears?

• For most patients with SCC there is no time to
  adapt to illness and disability
• Little opportunity to develop a sense of identity
  which incorporates these factors
• Patients acknowledged that MSCC required them to
  make practical plans to manage certain tasks
• But they tried to do this in a way that didnt
  threaten their sense of identity
• Who they are, their hopes and expectations

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Strategies used by patients

• Patients described how their lives had not
  intrinsically changed
• Inside they were who they had always been
• Emphasising their ability to manage by their
  resourcefulness and ability to solve problems
• Revising expectations of what they felt was
  acceptable for their quality of life
• E.g. initially a wheelchair was unacceptable to
  them but as it became evident they needed one to
  became seen as a positive way of getting around

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Strategies used by patients

• Setting safe boundaries (Eva 2009)
• Not putting themselves to the test
• Not trying to do things that they knew might not
  be achieved
• Limiting their exposure to challenging tasks or
  environments
• Avoiding confronting how difficult plans might be
  to achieved in reality
• Aiming for small realistic achievements
• Hoping to be able to stand with a frame/to use
  the banana board

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Coping with challenges (local study)

• Using the positive potential in uncertainty
• They have said they dont know if I will make any
  progress but that means that I might
• Focusing on the immediate practical issues rather
  than worrying about the long term
• e.g. Working through the practicalities of
  getting home/improving mobility
• The perspective sandwich
• Acknowledge the challenges faced while stating a
  potential positive
• E.g. some improvement in mobility,
• the action taken to help e.g. exercises, practice

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Strategies used by patients

• Looking forward to specific events and making
  plans for achieving them
• Some plans were achievable
• E.g going shopping in town in the wheelchair
• Some were plans that could not be achieved
• Often these were simply statements of intent e.g.
  we are planning to go on holiday in the camper
  van next year
• On one level it did not matter if the plans were
  realistic or achieved
• there was enjoyment to be had from looking
  forward to something happening at some
  unspecified time in the future

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Implications for HCPs

• The convention in healthcare is to encourage
  patients to accept reality
• However, a degree of lack of realism might be an
  effective way of coping with adversity
• What we think patients should want to achieve may
  not be the same as the patients perspective
• Hope as expectation, hope as wish

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Hope and coping

• What is hope?
• a confident yet uncertain expectation of
  achieving a future good, which to the hoping
  person, is realistically possible and personally
  significant
• Relative to the individuals circumstances
• Fluid and changing
• Personally constructed
• Not always necessarily achievable

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Thinking about hope (Wiles 2008)

• Hope as expectation
• Hope for an outcome to occur with the expectation
  that such an outcome is likely
• Hope as want, wish or desire
• Hope for an outcome where the likelihood of it
  happening is remote
• Expectation and wish could be seen as two ends of
  a continuum
• People move back and forth along the continuum
• People can simultaneously have different types of
  hope in relation to a range of recovery outcomes

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The role of positive illusions in hope and coping

• Many coping strategies are based on positive
  illusions rather than a realistic interpretation
  of events and the persons ability to control them
• Is this how we approach life normally?
• Consider the difference between hope as
  expectation and hope as wish
• Think of the to do list
• Should it be any different because a person has
  cancer?
• Positive illusions may play an important role in
  coping
• Might be more adaptive than realistic beliefs
• Generate more active ways of coping

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Implications for HCPs

• Difficulties if patients plans and their ability
  to achieve them clash
• E.g. concrete plans made for the unachievable
• Realistic plans arent made for everyday living
• However, there are usually 2 levels of goals
• overly optimistic/ impractical
• feasible and grounded
• Try not to contradict unrealistic goals
• look out for and develop achievable goals
• Patients can simultaneously hope for a cure and
  acknowledge the terminal nature of their illness
• No need to force the truth unless there is a
  sound reason to do so

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Is it that simple?

• In reality we all move back and forth between
  negative and positive
• In our study we found a constant negotiation of
  these positions

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Conclusions

• Patients with MSSC face enormous challenges
• Sometimes they want to talk about their problems
  and concerns and express anger, frustration and
  sadness
• Sometimes they want to focus on the positive
• Sometimes this includes non-achievable goals and
  wishes
• Important to listen to the patient and work with
  their strategies for coping
• Taking our cues from them but ensuring their care
  plans meet their current and future needs