outcomes following pediatric intensive care · school of nursing & department of pediatrics,...
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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