1. The Impact Of Pediatric Critical Illness, Injury, Complex Medical Conditions And Disabilities On Families
Office of Rare Diseases and the National Institute of Child Health and Human Development

2. Classical pediatric morbidity (1900s–1950s)
    Infectious diseases
    High infant mortality rates
    Poor nutrition
    Few cures for chronic disease
    Epidemics (eg, influenza, polio)
    Diseases of overcrowding
The new morbidity (1960s–1980s)
    Family dysfunction
    Learning disabilities
    Emotional disorder
    Functional distress
    Educational needs

3. Beyond the new morbidity (1980s–2000s)
    Social disarray
    Political ennui
    New epidemics (eg, violence, acquired immunodeficiency syndrome, crack cocaine, homelessness)
    Increased survivorship
    High-technology care
Millennial morbidity (2000–present): disorders of the bioenvironmental interface
    Socioeconomic influences on health, including poverty
    Health disparities
    Technological influences on health
    Overweight and obesity
    Increasing mental health concerns

4. Vision Statement
Admission of a child to the PICU can be one of the most stressful experiences a family may face.
9/16/2018
Office of Rare Diseases and National Institute of Child Health and Human Development

5. Goal and Objective
Goal :To review the current knowledge about the effect of a PICU experience on the family over time and identify the gaps where further research is needed
Objective: Systematically review the published literature on the impact of pediatric critical illness, injury, complex medical conditions and disabilities on families:  especially siblings and parents. Categorize and summarize the existing literature.
9/16/2018
Office of Rare Diseases and National Institute of Child Health and Human Development

6. What Is Known Pediatric critical illness Injury
Complex medical conditions
Disabilities

7. Medically fragile children are defined as those who have a serious, ongoing illness or chronic condition for at least a year, require prolonged hospitalization and ongoing medical treatments and monitoring and require the use of devices to compensate for the loss of bodily function.

8. Four Survivors – Traumatic Brain Injury, Cerebral Palsy with Recurrent Aspiration Pneumonia, Epileptic Encephalopathy, and E. Coli Meningitis

9. They Look To Us

10. Pediatric Critical Illness
Incidence
Prevalence
Cost of Hospitalization
Length of Hospitalization
Regional differences
Urban/Rural

11. Injury Incidence Prevalence Cost of Hospitalization
Length of Hospitalization
Regional differences
Urban/Rural

12. Complex Medical Conditions
Incidence
Prevalence
Cost of Hospitalization
Length of Hospitalization
Regional differences
Urban/Rural

13. Disabilities Incidence Prevalence Cost of Hospitalization
Length of Hospitalization
Regional differences
Urban/Rural

14. Defining The Family Defining Family – Demographic Study
Single parent by choice or divorce or death
Blended families
Multigenerational families
Gay or lesbian parents
Children living in foster or adoptive homes
Children living with grandparents, aunts uncles, older siblings, non relatives
Cultural differences in defining family
Stability of family over time

15. What Is Known – In The PICU
Coping abilities to crisis – not static
Family Response to the diagnosis
Role of the primary care provider
Ignorant and inaccurate - defining education for the primary care provider
Family roles and responsibilities
Mother is primary
Maternal depression
Process toward normalization and acceptance
Sibling impact
Financial
Social support
School
Long term adaptation of parents
Marital relations
Chronic sorrow
The dying child and family
Effect on Parents
Effect on Siblings

16. What Is Known – Life After The PICU
Coping abilities to crisis – not static
Family Response to the diagnosis
Role of the primary care provider
Ignorant and inaccurate - defining education for the primary care provider
Family roles and responsibilities
Mother is primary
Maternal depression
Process toward normalization and acceptance
Sibling impact
Financial
Social support
School
Long term adaptation of parents
Marital relations
Chronic sorrow
The dying child and family
Effect on Parents
Effect on Siblings

17. Research Gaps
Cultural Competency Many published studies provide information about the stressors that parents face when having a child hospitalized in the PICU, the needs that parents deem most important, and the types of coping strategies that parents use, yet most of these studies are biased toward white subjects; thus, more diverse samples are needed.
Health professionals must be culturally competent in recognizing how different ethnic groups respond to stress and its related consequences.
This competence can be achieved only if research is done to detect those differences.

18. Sources of stress in the PICU have been adequately described for mothers, but little is known about fathers.
Reasons for low participation rates of fathers should be explored.
The comparison of mothers’ and fathers’ experiences warrants further research because both parents’ experiences can affect a family’s outcome, and past research suggests that there may be discrepancies between mothers and fathers.

19. Empirical evidence indicates that some interventions are useful for decreasing perceived parental stress in the PICU.
Intervention studies must be replicated with larger and more diverse samples.
The parents in previous studies were primarily female, white, and in their 30s.
The interventions were effective in decreasing parental stress and should be tested in other PICU settings.
Not all PICUs are the same in terms of the diseases treated, demographics, and hospital and personnel policies.
Also, most samples studied were subjects in 2-parent families; future research should examine the effects of the PICU experience on single parents and compare findings between single- and 2-parent families.

20. Few reports of longitudinal research with PICU families have been published.
Longitudinal research that is exploratory and prospective will indicate problems that these families may experience over time.
Follow-up of families who have participated in intervention studies will indicate how effective and useful those interventions were for the families and will explicate the effects of a PICU experience on the adaptation (long-term) phase as described in the resiliency model.