Smelling of Roses

1
Smelling of Roses?

• Dave Green

2
Central question

• We generally believe that certain bad life
  events will inevitably lead to negative
  psychological consequences (eg bereavement)
• However there is huge heterogeneity in outcome
  after a wide range of adversities in childhood
• Whats going on?

3
People and Places

• Prof Sir Michael Rutter the pre-eminent UK
  child psychiatrist of his generation
• The Isle of Wight positioned off the southern
  coast of England

4
Child abuse

• Isle of Wight study followed up whole cohort of gt
  2000 children born on the island between 1953 and
  1955
• Followed up at various stages of their lives in
  intensive longitudinal study
• Latest reports describe middle-age (42-46) and
  consequences for adults of having experienced
  physical or sexual abuse as a child (Collishaw et
  al 2007)

5
Results

• Prevalence of retrospective self-reported child
  abuse was gt10
• Familiar correlation with deprivation and
  adversity
• Significantly higher than expected rates of adult
  psychopathology (especially recurrent major
  depression and suicide attempts)
• But 45 of this group were classified as
  resilient and reported no psychological problems
  at all in the 30 years since the previous
  interview
• This sub-group were functioning overall even
  better than the non-abused control group!

6
Same story with trauma

• PTSD is reported by a minority of those exposed
  to tragic accidents
• Some experience positive changes in outlook and
  these findings apply to both children and adults
  (Herald of Free Enterprise and The Jupiter in
  1990s)
• Psychological debriefing fell out of favour very
  quickly as unnecessary for most and harmful for
  some
• Quality of subsequent long-term support
  contributes to outcome (Alexander 2007)

7
Even death of a child

• South African study of parents attending a
  self-help group for bereaved parents - The
  Compassionate friends of Johannesberg
• 67 parents (49 mothers and 18 fathers) aged
  between 30 and 75 years whose children had died
  from car crash, illness, suicide or homicide
  (within last 8 years)
• 100 copies of posttraumatic growth inventory
  (PTGI) handed out at group meetings and 67
  returned

8
Polatinsky and Esprey (2000)

• Cut-off score on PTGI is 42
• Average score for mothers was 84 and for fathers
  was 80
• No significant gender difference but cause of
  childs death, time since death, and whether
  parent was married or not showed some
  associations with high PTGI scores

9
Childhood Cancer

• Survival rates approaching 75 overall but about
  2/3 live with a range of treatment-related
  physical or psychological late effects and the
  threat of relapse
• However there is no evidence that survivors
  overall report higher levels of symptoms than
  controls (Recklitis 2006)
• Nor are there evident differences on other
  non-symptomatic measures such as self-image
  profiles (Caygill 2003)

10
Can you believe it?

• When this pattern was originally reported some
  dismissed it as no more than pseudo-health
• Jack Cadranels notion of the brave little
  soldier hiding his pain
• So results may depend on who you ask when you
  ask how you ask and probably whos asking as
  well

11
Some simple statistics

• We know that a significant minority of childhood
  cancer survivors have illness-related adverse
  psychological consequences (PTSD levels estimated
  at 5 - 10 - Bruce 2006)
• Little consistent evidence to suggest that
  children with cancer routinely compare poorly
  with healthy children on measures of well-being
  (Eiser 2004)
• So it follows that some members of this
  population must be positively thriving despite
  having experienced life-threatening illness

12
Post-traumatic growth

• If resilience is the art of managing to protect
  yourself from expected adverse consequences (ie a
  neutral rather than negative outcome)
• PTG is a higher-order alchemy in which you find
  advantage from circumstances others see as highly
  threatening to your well-being

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Definition of PTG

• The cognitive process by which those who have
  experienced trauma apply positive interpretations
  to and find meaning in the traumatic event. This
  process results in restoration of pre and
  positive changes in ones sense of self,
  relationships and philosophy of life
  (Barakat et al 2005)

14
Evidence-base

• It happens a lot studies of heart attack
  survivors women with impaired fertility mothers
  of insulin-dependent diabetic children. A
  majority reported benefits
• It does you good long-term benefits reported
  for cardiac health in men who had heart attacks.
  58 reported PTG and they were more likely than
  remainder of the cohort to be well and have
  suffered no repeat attack 8 years later (Tennen
  and Affleck 1999)

15
What benefits?

• Typically respondents cite the following reasons
  to be cheerful
• Strengthening of relationships with family and
  friends
• Positive personality changes tolerance,
  courage, mental strength etc
• Shift in your sense of what matters most in life
  - priorities
• Looking after your health better

16
Either PTSD or PTG?

• Tempting to see PTSD and PTG as either end of the
  spectrum BUT
• Both negative and positive perceived consequences
  of cancer can co-exist
• Heightened sense of threat can precede greater
  subsequent benefit-finding
• So cancer experience can be helpfully viewed as a
  psychosocial transition with complex and varied
  outcomes

17
Research with adolescent cancer survivors

• US study by Barakat et al (2006)
• 150 cancer survivors aged 11-19 and their parents
  and siblings
• Off treatment at least 1 year
• Range of diagnoses leukemias (30) solid
  tumours (35) lymphomas (21)
• Mean age at diagnosis 7.9 years (range from 3
  months to 16.4 years)
• Decent balance of gender and ethnicity

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Measures employed

• Perception of Changes in Self 45 item
  semi-structured interview
• Intensity of Treatment ratings completed by
  paediatric oncologist and nurse practitioner
• Assessment of Life Threat and Treatment
  self-report likert scales
• Impact of Events Scale (Revised) 22 item
  measure of post-traumatic symptoms

19
Results (teenage patients)

• 84.1 of adolescent survivors reported at least
  one positive benefit of having had cancer and 32
  identified 4 or more
• Most common benefit was a positive change in
  how they think about life
• PTG correlated positively with the survivors
  perceptions of greater life threat and greater
  treatment intensity
• PTG and post-traumatic symptoms also positively
  correlated (unexpected finding)

20
Clinical applicability

• It stands to reason that those with the secret of
  PTG are unlikely to turn to psychologists for
  help
• Our sense of how well an individual has coped
  with adversity will be founded on a broader
  evidence base than single shot replies to a
  standardized questionnaire

21
A couple of case studies

• Rosie at 13 suffered from a brain tumour (pineal
  blastoma) that has affected her eyesight and
  reduced her powers of concentration
• She was fed through a tube for a long time
• Her parents describe her as more outgoing and
  cheerful than before her illness
• She has excellent relationships with both her
  parents (though they are separated)
• However she also has a powerful need for
  predictability and control

22
Extract from discharge letter I wrote to Rosie

• As you will remember I asked you to rate how you
  were feeling at the beginning of all our
  sessions. Top rating was 10 and you consistently
  gave yourself marks in the 8-10 range. So,
  despite everything that has happened to you the
  fear, the pain, the loss of vision you seem to
  be in a good mood most of the time.

23
Extract from discharge letter I wrote to Rosie

• Im sure you must have your down times but I
  dont see them and I know your parents share my
  respect for your resilience. Indeed I recall your
  dad saying he thought youd bounced back from
  your illness stronger than ever in some ways.

24
Extract from discharge letter I wrote to Rosie

• I dont know how youve managed to do it. Im not
  sure you know how youve managed to do it. But I
  think it says a lot about your personality and
  attitude to life, so my hope is that youll keep
  this positive outlook in the future whatever fate
  befalls you

25
Dannys tale

• Danny is now 23 and has suffered from Blackfan
  Diamond syndrome ( a congenital form of anaemia)
  all his life
• At age 11 he had a bone marrow transplant that
  was only partially successful
• He is small of stature bedevilled by medical
  problems across most of his bodily systems has
  been regularly hospitalised underachieved at
  school has already survived longer than
  expected and somehow seems to enjoy life

26
Secrets of his success

• Danny avoids all problem saturated talk . People
  dont want to listen to my problems. And I dont
  want to listen to theirs
• He prefers to entertain and thrives on an
  audience. Isolation threatens his very existence.
  Take away my social contacts and you take away
  me
• Turned his odd appearance from a liability (when
  hed get bullied for being a zombie) to an
  asset (so fashionable that folk want to have
  their pictures taken with him)

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Mechanism?

• Not clear as positive psychology has been a bit
  slow off the blocks
• Genetics likely to be implicated (cf link between
  child abuse and depression)
• Social support from family and friends
• Personality factors under examination (eg resting
  hedonistic level theory)
• Cognitive re-appraisal and rewriting your life
  narrative seems promising line of research
  (Tedeschi and Calhoun 2004)

28
Closing concerns

• The evidence base is limited. What about longer
  term follow-up and the challenges of emerging
  adulthood?
• Is there a danger that the positive climate we
  seek to promote on our units suppresses stories
  of pain and despair? Might young people end up
  feeling blamed for their suffering?

29
Final warning to clinicians!

• Respect the adaptive value of benefit-finding
  and benefit-reminding while resisting the
  understandable desire to directly influence these
  adaptational processes
• You run the risk of being seen as INSENSITIVE and
  INEPT
• We dont know enough yet to be able to apply
  these ideas predictably