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ALIENATION

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alienation & post-traumatic stress disorder in children and families with scid dr peter vickers university of hertfordshire background all children who had received ... – PowerPoint PPT presentation

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Title: ALIENATION


1
ALIENATION POST-TRAUMATIC STRESS DISORDER IN
CHILDREN AND FAMILIES WITH SCID
  • DR PETER VICKERS
  • UNIVERSITY OF HERTFORDSHIRE

2
BACKGROUND
  • All children who had received BMTs for SCID in UK
    Germany from 1982-1992 55 children
  • Smaller subgroup 34 children
  • parents/families/teachers interviewed
  • parent/teacher questionnaires
  • discussion with children
  • childrens drawings

3
GENERAL RESULTS
  • Although many of the children and their families
    were found to have a reasonable to good quality
    of life, several long-term psychosocial problems
    were identified.
  • This paper concentrates on 2 of them
  • 1. Alienation
  • 2. Post-traumatic stress disorder (PTSD)

4
ALIENATION
  • Defined as an inability to develop positive
    relationships with others.
  • Seen in
  • parent from child/child from parent
  • parents from each other
  • parents from family/family from parents
  • child from family/family from child
  • parents/child/ family from society

5
DIANA - MY FAMILY
6
ALIENATION
  • In children, it manifested itself in their
    activities, which could be divided into 3 groups,
    although there may have been some overlapping.
  • These groups arose out of discussion with parents
    and children, in answer to being asked what
    things the children enjoyed doing, and also in
    the children's drawings.

7
ROSIE - MY FAMILY
8
CHILDRENS ACTIVITIES - SOLITARY/FAMILY
  • mental activities
  • playing alone outside
  • playing with toys
  • playing on a swing
  • running on the spot
  • running
  • walking
  • walking with dog
  • jumping
  • helping parents
  • painting and drawing
  • writing
  • reading
  • listening to music
  • fantasy play
  • watching TV on own
  • sewing
  • building things

9
CHILDRENS ACTIVITIES - GROUPS
  • sport
  • playing football
  • playing table tennis
  • karate
  • fighting
  • drama
  • Scouts Guides

10
CHILDENS ACTIVITIES - NON-COOPERATIVE
  • cycling
  • skiing
  • sledding
  • riding
  • gymnastics

11
THOMAS - MY FAMILY
12
RELATIONSHIPS ALIENATION - TO CONSIDER
  • separation
  • previous history
  • behaviour of child
  • different needs and expectations
  • BUT - can bring close together
  • support/social philosophies

13
MARGARET - MY FAMILY
14
  • It can be seen from the previous lists that by
    far the largest group is the one in which the
    activities are solitary, although they make take
    place within the family
  • So how does alienation manifest itself, and how
    does it occur?
  • There are several possible reasons

15
CAUSES OF ALIENATION (1)
  • separation
  • physical isolation
  • psychological isolation
  • linguistic/vocabulary isolation
  • being special
  • problems with bonding and attachment

16
CAUSES OF ALIENATION (2)
  • guilt blame
  • stressors
  • lack of support
  • chronic illness
  • lack of opportunities for play with others
  • jealousy

17
JOHN - MY FAMILY
18
The main developmental task is related to the
development of basic trust Eiser, 1990 p.59
19
JOACHIM - MY FAMILY
20
The notion of attachment when related to
separation from care-givers (either of long
duration or repeated separation) may not be
conducive to the formation of trusting
relationships Butterworth et al. 1994
21
FRANZ- MY FAMILY
22
There are indications in the literature that
chronically sick children can appear socially
isolated. Eiser, 1990 p.112
23
JEANS FATHER
  • They hardly let us come out because of the tube.
    We had to be guided by who we could get to come
    to put it in. Remember? Doctor Ahmed gave me a
    lesson on putting it down. A crash course, he
    said.
  • I was . I think that was . Of it all . That
    was . It really was. Up to that, I mean . Up
    till then . We didnt .

24
POST-TRAUMATIC STRESS DISORDER
  • 1. Parents
  • 2. Extended family
  • 3. Children

25
WHAT IS PTSD?
  • The essential feature of PTSD is the development
    of characteristic symptoms following exposure to
    an extreme traumatic stressor involving direct
    personal experience of an event that involves
    actual or threatened death or serious injury, or
    other threat to ones physical integrity, or
    witnessing an event that involves death, injury
    or a threat to the physical integrity of another
    person

26
  • The persons response to the event must involve
    intense fear, helplessness, or horror (or in
    children, the response must involve disorganised
    or agitated behaviour.
  • The characteristic symptoms resulting from the
    exposure to the extreme trauma include persistent
    avoidance of stimuli associated with the trauma
    and numbing of general responsiveness, and
    persistent symptoms of increased arousal.

27
  • The full symptom picture must be present for more
    than 1 month, and the disturbance must cause
    clinically significant distress or impairment in
    social, occupational, or other important areas of
    functioning.
  • Being diagnosed with a life-threatening illness
    is one such traumatic event.
  • DSM-IV (1994)

28
PTSD - CRITERIA
  • Degree of life threat
  • Duration of trauma
  • Degree of bereavement or loss of significant
    others
  • Displacement from home community
  • Potential for recurrence of trauma
  • Role in the trauma
  • Exposure to death destruction
  • Wilson et al, 1985/ Heiney et al, 1994

29
GENERAL
  • Discussion with other parents has shown that
    these themes of alienation and PTSD are not
    exclusive to SCID, but are also found in many
    other situations, including
  • children in PICU/NICU
  • other immune deficiency disorders
  • cancers
  • trauma

30
CONCLUSION
  • More research needs to be done on these two
    problems.
  • It would be nice to explore these themes again in
    other immunodeficiencies

31
When viewed from the PTSD framework, parental
reactions to a childs bone marrow transplant
offer striking parallels that include assessment
of the event as traumatic, re-experiencing the
event, intrusive thought, and a variety of
emotional and cognitive responses. Heiney et
al. 1994 p.843
32
BRUCES FATHER (1)
  • Theres a psychological aspect of all your
    family aspirations. The preparation of building
    up your family - getting all your . buying all
    your stuff for your first child. The nursery and
    everything like that. Then, all of a sudden,
    youre into into fatherhood and motherhood, and
    somebody pulls the carpet from underneath your
    feet. And its like that then for the next couple
    of years. So everything that you planned in your
    mind, for that couple of years, goes.

33
BRUCES FATHER (2)
  • And nobody ever seemed to consider nobody seems
    to consider the relationship the loving
    relationship between the mother and the father.
    The bond that should have occurred as parents
    stepping from husband and wife into parents.
  • All your aspirations as to how youre going to
    cope as parents go out the window as well. Nobody
    ever steps in to deal with that.
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