Office of Rare Diseases and the National Institute of Child Health and Human Development

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. 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. 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.