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

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 • children’s 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. 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 CHILDREN’S ACTIVITIES - SOLITARY/FAMILY

9. CHILDREN’S ACTIVITIES - GROUPS • sport • playing football • playing table tennis • karate • fighting • drama • Scouts & Guides

10. CHILDEN’S 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. JEAN’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 ….”

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

26. 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.”

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 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

32. 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.

33. 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.”