ALIENATION & POST-ALIENATION & POST-TRAUMATIC STRESS TRAUMATIC STRESS DISORDER IN CHILDREN AND DISORDER IN CHILDREN AND FAMILIES WITH SCIDFAMILIES WITH SCID

DR PETER VICKERSDR PETER VICKERS

UNIVERSITY OF HERTFORDSHIREUNIVERSITY OF HERTFORDSHIRE

BACKGROUNDBACKGROUND

All children who had received BMTs for SCID in UK & Germany from 1982-1992 = 55 children

Smaller subgroup = 34 childrenparents/families/teachers interviewedparent/teacher questionnairesdiscussion with childrenchildren’s drawings

GENERAL RESULTSGENERAL RESULTSAlthough 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. Alienation2. Post-traumatic stress disorder (PTSD)

ALIENATIONALIENATIONDefined as an inability to develop

positive relationships with others.

Seen in:parent from child/child from parentparents from each otherparents from family/family from parentschild from family/family from childparents/child/ family from society

DIANA - DIANA -

MY FAMILYMY FAMILY

ALIENATIONALIENATION

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.

ROSIE -ROSIE -MY FAMILYMY FAMILY

CHILDREN’S ACTIVITIES - CHILDREN’S ACTIVITIES - SOLITARY/FAMILYSOLITARY/FAMILYmental activitiesplaying alone outsideplaying with toysplaying on a swingrunning on the spotrunningwalkingwalking with dogjumping

helping parentspainting and drawingwritingreadinglistening to musicfantasy playwatching TV on ownsewingbuilding things

CHILDREN’S ACTIVITIES - CHILDREN’S ACTIVITIES - GROUPSGROUPSsportplaying footballplaying table tenniskaratefightingdramaScouts & Guides

CHILDEN’S ACTIVITIES - CHILDEN’S ACTIVITIES - NON-COOPERATIVENON-COOPERATIVE

cyclingskiingsleddingridinggymnastics

THOMAS - THOMAS - MY FAMILYMY FAMILY

RELATIONSHIPS & RELATIONSHIPS & ALIENATION - TO CONSIDERALIENATION - TO CONSIDER

separationprevious historybehaviour of childdifferent needs and expectations

BUT - can bring close togethersupport/social philosophies

MARGARET - MY FAMILYMARGARET - MY FAMILY

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

CAUSES OF ALIENATION (1)CAUSES OF ALIENATION (1)

separationphysical isolationpsychological isolationlinguistic/vocabulary isolationbeing specialproblems with bonding and attachment

CAUSES OF ALIENATION (2)CAUSES OF ALIENATION (2)

guilt & blamestressorslack of supportchronic illnesslack of opportunities for play with othersjealousy

JOHN - MY FAMILYJOHN - MY FAMILY

“The main developmental task is related to the development of basic trust”

Eiser, 1990; p.59

JOACHIM - MY FAMILYJOACHIM - MY FAMILY

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

FRANZ- MY FAMILYFRANZ- MY FAMILY

“There are indications in the literature that chronically sick children can appear socially isolated.”

Eiser, 1990: p.112

JEAN’S FATHERJEAN’S 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 didn’t ….”

POST-TRAUMATIC STRESS POST-TRAUMATIC STRESS DISORDERDISORDER

1. Parents

2. Extended family

3. Children

WHAT IS PTSD?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 one’s physical integrity, or witnessing an event that involves death, injury or a threat to the physical integrity of another person…”

The person’s 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.”

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)

PTSD - CRITERIAPTSD - CRITERIADegree of life threatDuration of traumaDegree of bereavement or loss of

significant othersDisplacement from home communityPotential for recurrence of traumaRole in the traumaExposure to death & destruction

• Wilson et al, 1985/ Heiney et al, 1994

GENERALGENERALDiscussion 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/NICUother immune deficiency disorderscancerstrauma

CONCLUSIONCONCLUSION

More research needs to be done on these two problems.

It would be nice to explore these themes again in other immunodeficiencies

“When viewed from the PTSD framework, parental reactions to a child’s 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

BRUCE’S FATHER (1)BRUCE’S FATHER (1)“There’s 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, you’re into … into fatherhood and motherhood, and somebody pulls the carpet from underneath your feet. And it’s like that then for the next couple of years. So everything that you planned in your mind, for that couple of years, goes.

BRUCE’S FATHER (2)BRUCE’S 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 you’re going to cope as parents go out the window as well. Nobody ever steps in to deal with that.”