Children’s Psychological

Outcomes Following

Pediatric Intensive Care

Janet E. Rennick, RN, MScN, PhD

The Montreal Children’s Hospital,

McGill University Health Centre

School of Nursing & Department of Pediatrics,

Faculty of Medicine, McGill University

Funding:

Canadian Institutes of Health Research (CIHR)

Fonds de la recherche en santé du Québec

SickKids Foundation/IHDCYH-CIHR National Grants Program (Canada)

Montreal Children’s Hospital Research Institute

Overview

PICU hospitalization: A traumatic

stressor

Evolution of psychological outcomes

research

Towards a broader understanding of

the construct of psychological distress

Moving research & practice forward

Some Background…

Qualitative study (phenomenology): parents’ experiences following their child’s admission to a PICU (Rennick, 1987)

What is happening with my child, psychologically?

Concern regarding child’s ability to cope with the trauma of illness – in the PICU and post-discharge

“No one understands this sort of thing;

they say, well, but her surgery went so

well – but it’s not that easy.” (Parent of child

post-cardiac surgery)

PICU Hospitalization:

Traumatic Stressor

Traumatic experience: one in which

“the person experienced, witnessed, or

was confronted with an event or events

that involved actual or threatened death

or serious injury, or a threat to the

physical integrity of self or others” (DSM-IV criteria, APA 1994)

PICU Hospitalization:

Traumatic Stressor

Traumatic Admission Circumstances

Planned (e.g. high risk surgery)

Unplanned (e.g. trauma, acute exacerbation of

chronic illness)

Aversive Environmental Stimuli

Constant elevations in light & noise levels (people,

medical equipment)

Strangers providing highly invasive care

Separation from family

Exposure to critically ill & dying children

PICU Hospitalization:

Traumatic Stressor

Highly Invasive Technological

Procedures

Connected to equipment via

multiple lines & tubes

Intubation, suctioning

Sedation, analgesics, restraints…

promote compliance with

interventions, comfort,

physiologic recovery

Invasive caretaking procedures

A Changing Population

Emergency Admissions (Dosa et al. Pediatrics 2001)

~45% pre-existing chronic health conditions

~55% previously healthy, BUT may leave with

special health care needs/technology dependence

Post-op Population

Often long-term special health care needs:

chronic illness, technology dependence,

developmental disability

Mortality increasingly rare; survival no

longer an adequate outcome measure

A High Risk Population

~25% of children demonstrate negative

psychological outcomes post-PICU (Rennick & Rashotte 2009; Davydow 2010)

> 210,000 admissions/year North

America

> 52,000 children/year in North America

may be negatively affected

Evolution of Outcomes Research

Prior to 1980 – Mortality (& medical morbidity)

1980’s & early 90’s – Beginning concern re: negative psychological outcomes

Nursing Parents’ experiences/needs/coping

Children’s memories/recall days post-discharge

Medicine/Psychiatry PTS framework applied to severe childhood

illness: Cancer (BMT), solid organ transplants, meningitis, traumatic injuries (e.g. burns, MVAs)

Primary focus: Diagnosing PTSD

Evolution of Outcomes Research

1995 to present – Heightened concern re:

psychological outcomes

Multidisciplinary Research

Behavioural Changes

Perceptions and recall

Health Related QoL (emphasis on functional

status as numbers of survivors increase)

Post-traumatic stress symptoms

PTSD (Diagnosis remains primary focus)

Outcomes Research: Findings

Up to 63% (n=102) recall some aspect of PICU stay (e.g., medical procedures, intubation, pain); 32% have at least one delusional memory (Colville et al 2005, 2006)

Changes in memory, attention span, cognitive functioning, self-esteem, self-confidence (Carnevale 1997)

Deterioration in emotional well-being (HRQoL) in 20-30% of children up to 1 year post-PICU (Jayashree et al 2003, Jones et al 2006, Knoester et al 2007)

Children’s Psychological

Responses Post-PICU (Rennick et al 2002, 2004)

Children who were younger, more severely ill, exposed to more invasive procedures at increased risk:

lower sense of control over their health

more medical fears

more symptoms of post-traumatic stress

Invasive procedures most important predictor of negative outcomes

Children’s Psychological

Responses Post-PICU

Study Limitation: PTS measure

Not validated with PICU population

FA findings inconsistent with those

generated from adult study data

Symptoms of distress reported by parents

not captured by the measure

Outcomes Research: Findings

PICU hospitalization increases risk of post-traumatic stress symptoms; psychiatric disorders diagnosed far less frequently

Point prevalence of PTS symptoms (irritability, avoidance of situational reminders of admission, anxiety, fears, depression) at 3-12 mths = 10-28% (Davydow et al 2010)

As high as traumatically injured children (14% at 4 mths, Di Gallo 1997) & cancer survivors (12% of sarcoma survivors ~7 mths post-treatment, Wiener et al 2006)

Study instruments not validated in pediatric critical illness survivors

Child Report Data (Rennick & Rashotte 2009)

Limited child-report data

Interview Data (n=7)

Measurement Data (n=9)

Interviewer-administered measures (n=5)

Self-report measures (n=4)

Children <5 years poorly studied

Child self report, n=2 (4-15 yrs; 4-16 years)

Parent proxy report, n=12 (2wks-17 yrs; 6 mos-15

yrs; 2-15 yrs; 3-16 yrs…)

Measurement Development Work

Development of a Measure of

Psychological Distress for Children

Post-PICU: The Children’s Critical

Illness Impact Scale (CCIIS)©

Development of the Young Children’s

Critical Illness Impact Scale (Y-CCIIS)©

Findings (Rennick et al 2008, 2011)

Children expressed anxiety regarding medical

procedures, possible hospital readmission,

and follow-up care

Parents identified behavioral changes (e.g.,

sleep disturbances, nightmares, increased

separation anxiety)

Children felt parents treated them differently

since hospitalization (e.g., more protective)

Findings

Children & parents identified changes in children’s friendships

Parents identified increased social isolation

Children felt they were no longer the same person they were before hospitalization (emotionally, physically)

Children worried life might never go back to normal (e.g., because of physical sequelae; or just feeling “different”)

Psychological Well-Being in

Childhood: A Definition

The absence of psychological symptoms,

participation in age-appropriate tasks and

activities within the context of the family and

broader community, and feelings of positive

self-esteem (Immelt 2006)

Highlighted in our study findings…

historically, poorly reflected in the PICU

literature

CFA: 3-Factor Solution

Factor 1: Worries about getting sick again and not getting better

Factor 2: Feeling things have changed around me (i.e., relationships with family & friends) and inside me (i.e., alterations in sense of self)

Factor 3: Feeling anxious and fearful about hospitalization (when remembering or thinking about it)

Conclusions

The construct of post-PICU distress is

broader than that reflected in measures

commonly used to-date, and reflects a

broader conceptualization of childhood

psychological well-being

A Model of Pediatric Medical

Traumatic Stress (Kazak et al 2006)

PMTS: “A set of psychological and

physiological responses of children & their

families to pain, injury, serious illness,

medical procedures, and invasive or

frightening treatment experiences” (National Child

Traumatic Stress Network, 2003)

Conceptualized as post-traumatic stress

symptoms, NOT as a traumatic stress

disorder

Beginning to Translate Knowledge: A

Model of Pediatric Medical Traumatic

Stress (Kazak et al 2006)

Pre-existing

factors

Characteristics

of Event

Potentially

traumatic

Events

(PTE)

(objective)

Experience

of PTE

(subjective)

Early

(acute)

responses

ongoing

demands/

challenges

Ongoing/

Evolving

responses

1st wks/

months –

timing

variable

Long-term

responses:

PTS

Symptoms

(acute threat

resolved)

Peri-trauma

Possible to distinguish in current

literature?

What does the research tell us?

Predictive Factors

High externalizing (e.g.

aggression) & internalizing

(e.g., anxiety, depression)

behaviors at baseline predict

negative externalizing/

internalizing behaviors at 6

mths (Melnyk et al 2004, 2006)

Nature of illness (chronic) &

previous experience?

Child age?

Pre-existing

factors

Characteristics

of Event

Potentially

traumatic

Events

(PTE)

(objective)

Experience

of PTE

(subjective)

Predictive Factors

Medical diagnoses not

related to outcomes at 3-6

months (Kazak et al 2006;

Rennick et al 2004; Shudy 2006)

Admission circumstances?

Acute exacerbation of

chronic illness?

Turning point in chronic

illness trajectory?

Pre-existing

factors

Characteristics

of Event

Potentially

traumatic

Events

(PTE)

(objective)

Experience

of PTE

(subjective)

Predictive Factors

Illness severity, length of

stay, # invasive procedures

predict negative outcomes to

6 mths (Davydow et al 2010)

Medications, including

opiates/ benzodiazepines for

2+ days not associated with

PTS symptoms at 3 mths

(Colville et al 2008)

Pre-existing

factors

Characteristics

of Event

Potentially

traumatic

Events

(PTE)

(objective)

Experience

of PTE

(subjective)

Experience of PTE

High maternal state anxiety predicts

heightened child anxiety & externalizing

behaviors at 3 months (Small & Melnyk 2006)

PICU experience highly anxiety-provoking for

child; child’s perceptions differ from parents’

& nurses’ perceptions (Rennick et al 2009)

Much known about parents’ PICU experience

Links between PICU experience (e.g., parent

involvement in care) and child outcome?

Post-PICU Responses

Decreased attention span (2 months)

Altered Relationships (3 months)

Changes in child’s sense of “self”;

decreased self-esteem, self-confidence

(to 3 months)

Delusional memories, hallucinations (3

months)

Early

(acute)

responses

ongoing

demands

Ongoing/

Evolving

responses

1st wks/

months

Post-PICU Responses

Increased medical fears (to 6 months)

Depression (6 months)

Avoidance of situational reminders of admission (to 6 months)

Anxiety (to 1 year)

Decreased emotional well-being (HRQoL; 1 year)

Long-term

responses

PTS

Symptoms

Research Limitations

Narrow conceptualization of psychological

well-being

Construct of post-PICU distress understudied

Little known about outcome predictors

High attrition rates in “long-term” studies

Retrospective, parent report data

Children under 5 years of age rarely studied

Difficult to compare findings: multiple measures

Moving Research & Practice Forward:

Changing PICU Demographics

Emergency Admissions (Dosa et al 2001)

~45% pre-existing chronic health

conditions

Remainder may leave with special health

care needs

Post-op Population

Often long-term special health care needs

Children with Chronic

Health Conditions

A distinct PICU population (Graham et al 2009)

Parents provide complex care at home

Require a different care-taking approach

PICU admission may constitute a turning

point in illness trajectory

Staff & family perspectives & care priorities

may differ

Preventable Admissions

Estimated that 1/3 of unplanned admissions with chronic health conditions may be preventable (Dosa et al 2001)

Family/environmental factors Medication noncompliance; delays in seeking

medical attention; inadequate home supervision

Health system deficiencies Inadequate care coordination & support

services; External diagnostic decisions

“Traumatic medical events happen to

children embedded in families” (Kazak et al 2006)

Stressors: Situational, personal (time off

work, financial), environmental (Miles & Carter 1982)

Parental Needs: Partner in caretaking &

decision-making, support, open & receptive

communication (Shudy et al 2006)

Parenting

Parenting through PICU Transitions

Hope rises and falls with child’s progress

Staff communication & behaviour strong

determinants of parental stress

As awareness of complexity of care & child’s

vulnerabilities increase, stress increases (Graham et al 2009)

Reconciling potentially profound changes

and rebuilding their lives (Carnevale 2003)

Do Parents’ Support

Needs Change?

Parents of child with chronic illness found to receive less support from staff than parents of child with life-threatening illness (Katz 2002)

Does disease acuity & stage in evolution toward chronicity influence the type/amount of support available to parents?

Disconcerting, as maternal stress levels increase when chronic disease is a likely outcome

Impact on child?

Practice Guidelines (Davidson et al, CCM 2007)

Clinical practice guidelines for family support in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005 Staff training to assess needs/anxiety in PICU and

at discharge

Consistent caregivers, regular information

Promote family involvement in care, incorporating family knowledge & caretaking skills

Multi-disciplinary support

Practice Guidelines

Foster parent-staff partnership in care, active

involvement in rounds, decision-making

“I am always a little bit shocked when I come into

the ICU…we are expected to be experts at home

[but] we are not always experts here. In fact, most

of the time we are not.” (Graham et al. 2009)

“I liked how we worked out what procedures were

going to be done, and I could work out what I could

be there for.” (Rennick et al. 2011)

Practice Guidelines (Davidson et al, CCM 2007)

Bridge hospital & community-based

services to enhance communication &

decision making

Include family’s primary support staff

Discharge planning, coordination of care

MCH Pediatric & Adolescent

Trauma Centre

Of >15,000 ED cases/year, ~500 require hospitalization

Family-centred care Trauma coordinators develops inter-professional coordinated

treatment plan with the family

Fosters continuity, communication, decision making

Integration of hospital & community services Medical, surgical, nursing, rehabilitation, psychosocial

expertise of ~30 departments and services

Family followed through ED, critical care, rehab & recovery, return to school, home, or transfer to community resource

www.thechildren.com/trauma

Conclusions: Looking

Towards the Future

Critically ill children at risk for negative

psychological outcomes post-PICU

Construct of post-PICU distress broader

than that reflected in studies to-date

Need to better understand predictors &

long-term outcomes, including change over

time

Conclusions: Looking

Towards the Future

Improve communication between

multidisciplinary research & clinical teams

Model of PMTS, along with a broader

conceptualization of childhood

psychological well-being would enhance

both future research & clinical practice