PICU: The parents’ experience

Gillian Colville

St George's Hospital

London UK

Video links from 24 hours in A&E

• Baby sudden illness –

https://m.youtube.com/watch?v=xKn9AzKPFtY

• Louie child RTA – http://www.channel4.com/programmes/24-hoursin-ae/videos/all

• Adam young adult RTA -https://m.youtube.com/watch?v=KTr8LmyHDJY

• Research on parents' recollections of experience, 8 months on

• Concept of Post-traumatic growth

• Prevalence of PTSS/PTSD at 3 months and 1 year

Parents’ recollections

Parent Interview @ 8 months

n=34 mothers; 18 fathers

GHQ Memories of PICU

PSS:PICU Coping

IES Views on follow up

Achenbach CBCL

QUANTITATIVE DATA

Ref: Colville & Gracey ICCN 2006

PSYCHOPATHOLOGY

• GHQ-28

n=22 (42%) above cut off

• IES Intrusion and Avoidance subscales

n=23 (44%) in moderate/severe range

60% scoring over at least one cutoff

Non significant associations withpsychopathology measures

Ventilation status

Prognosis

Days on PICU

What predicted distress8 months later?

• witnessing distressing procedures in hospital(p<0.001)

• communication problems during admission(p<0.01)

• not talking about it (p=0.02)

• unwell >24 hrs before PICU (p=0.02)

Mothers and Fathers scoreson IES

1717N =

FA THERSMOTHERS

60

50

40

30

20

10

0

7

Coping Strategies

• Trust 97%

• Hope 82%

• Info. 82%

• Care 70%

• Autopilot 68%

• Routine 63%

• Talking 60%

• Faith 44%

• Diary/Photo 30%

Length of illness pre-admission

GHQ

<24hrs 24hrs+

1713N =

time ill

more than 24 hoursless than 24 hours

GH

Q

30

20

10

0

63

86

Strain on ‘non-ventilated’ parents

ParentStress reRole

2311N =

ventilated

ventilatednot ventilated

pss

pa

ren

tsro

le

6

5

4

3

2

1

0

non vent

Distress levels in parents by whether theywant follow up

WANT FOLLOW UP

YESNO

IES

30

20

10

0

QUALITATIVE DATA

Ref: Colville et al ICCN 2009

QUOTES: PICU

• “It was like stepping into the ‘Star Ship Enterprise’!”

• “It was like arriving in paradise”

• “it is like a little oasis”

QUOTES: CHILD’S APPEARANCE

• “she looked totally drugged, dazed, gone, she was just out, puffy”

• “she just looked horrific, bright red face, tubes coming out of everypossible place “

• “she was so bloated and she looked terrible, I just could not makemyself to go near her.

QUOTES: FEAR OF DEATH

“I thought meningitis you are dead.”

“The thought that my baby was going to come

home in a little white coffin”

“just like a dead body at the bed”

QUOTES: COPING

“I blocked a lot of it out otherwise I would have goneround the twist”

“I had no desire to go out shopping or get some air -my whole world was that one bed”

“for a month, we just forgot about everything else.”

“We sort of got through it, we had to! ”

*Subjective perception that child could die

predicted later PTSD*

Ref: Balluffi et al (2008)

QUOTES: HUMOUR

• “for something as serious it is quite laid back, you have a laugh and ajoke with people”

• “The doctor … cheered me up

with some good jokes “

Stresses pre and post admission

• Local hospital and journey

• Transfer to ward

QUOTES: BEFORE PICU

• “I think actually of all the experiences that was my worst, I really hadto beg on my knees at X (local hospital) for any sort of attention. “

• “The journey to the hospital was probably the worst 12 minutes ofmy life”

QUOTES: TRANSFER TO WARD

• “planets apart “

• “The room from hell. When I saw it, I couldn't stop crying . “

• “The difficulties were … before and after. PICU itself was fine”

Transfer to General Ward

• Responsibility for child’s care

• Child’s emotional demands

• Parents’ resilience

• Level of staffing

• Staff expertise

QUOTES: POSITIVE ASPECTS

“Because of the accident, he is very, very, special to me."

“We saw the best of people during that time”

“ I re-valued my life totally. This house could burn down

tomorrow as long as my family stood out there

I wouldn't worry ”

Staff behaviourthat parents appreciated

• “I just thought they were all fantastic, they never did anythingwithout letting you know what they were going to do”

• “They were very good with us even when we asked silly questions”

• “They weren’t patronising,they were just normal and nice”

• “All the staff there were very good, if you wanted to talk you talk, ifyou didn’t want to talk you didn’t.”

Main Findings (1)

• Distress at 8 months not predicted by severity of condition

• Communication problems predict GHQ

• Distress re what is witnessed predicts IES

• IES lower in those who talked

Main Findings (2)

• Most parents want follow up

• Preferred timing of follow up is +2 months

• Preoccupation with pre and post admission

• Positive and negative experiences

Post traumatic growth

Positive Psychology

• Positive psychology : Seligman

www.authentichappiness.org

• Traumatic stress literature –

regular comments about positive aspects

coexisting with negative

Nietzsche

“That which does not kill me

makes me stronger”

Post-traumatic Growth

“It is through this process of struggling with adversity that changes

may arise which promote the individual to a higher level

of functioning than that which existed prior to the event”

Ref: Linley & Joseph 2004

Ref: O’Leary & Ickovics 1995

Post Traumatic Growth Inventory (n=66)

100.090.080.070.060.050.040.030.020.010.00.0

PTGI

Fre

qu

en

cy

16

14

12

10

8

6

4

2

0

Mean 47.5 (SD=23.5)

PTGI factors

6666666666N =

appreciation of life

spiritual change

personal strength

new possibilities

relating to others

de

gre

eo

fch

an

ge

5.0

4.0

3.0

2.0

1.0

0.0

Ref: Colville & Cream Intensive Care Med 2009

Prevalence of PTSS/PTSD

Parent and Child

Post Traumatic Stress

0%

10%

20%

30%

40%

50%

3 months 1year

Ref: Colville & Pierce (2012) Intensive Care Med

Parents: new cases at 1 yr

0%

10%

20%

30%

40%

50%

3 mths 1 year

new case

case at 3m

0%

10%

20%

30%

40%

50%

3 mths 1 year

new case

case at 3m

Children: new PTSD cases at 1y

Post traumatic stress patterns at 1 year

or

child ok

parent ok

child PTS

parent PTS

Associations between parent and childPTS scores over time (n=66)

parent PTS parent PTS

child PTS child PTS

avoidance

0.38**

0.44**

3m 1y

0.32** 0.010.38**