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
44
Embed
Outcomes Following Pediatric Intensive Care · School of Nursing & Department of Pediatrics, ... special health care needs/technology dependence ... meningitis, traumatic injuries
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
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)
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)
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
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