Frank X. Placencia, M.D.

1. Frank X. Placencia, M.D. Department of Pediatrics Baylor College of Medicine Texas Childrens Hospital Familial Consequences of Providing Long-Term Care to High-Risk Infants

2. Objectives Review of consequences to family of providing long-term care for high-risk infants Review recurring themes Effects on women Strategies to ameliorate these effects Impact on Parental Counseling

3. Review Widespread use of surfactant, prenatal steroids and new modes of PPV has led to increased survival at the edge of viability 1980-1990 mean survival ≤ 26 wk gestation increased 2% year Increased intervention for congenital anomalies or other potentially fatal conditions Fetal surgeries, EXIT procedures Background

4. Review Therefore, greater numbers of infants with morbidity Technology-dependent infants pose greatest caregiving burden Major shift of location of care from medical facilities to homes Increased demands on caregivers’ time and finances Background

5. Review Committee on Fetus and Newborn: Discharge of the High-Risk Neonate Includes preterm and tech-dependent infants Recognizes these families at risk for familial stress & dysfunction and illness in primary caregiver Physicians to anticipate and plan for these burdens and coordinate care with ancillary staff Guidance not provided AAP Statement

6. Review Assistance for these families needs to be evidence-based No systematic review of the literature looking at the full impact of providing long term care for high-risk neonates Evidence Needed

7. Review Review of the literature (PubMed, ERIC) on the effects of long term care on the families Goal was ELBW infants or tech dependent – very few found Expanded to studies of families of former NICU graduates Methods

8. Review Limited to Jan. 1993 – Dec. 2009 Represents “modern” era Steroids, surfactant, new PPV techniques Limited to North America To avoid social support variability Excluded articles limited to 1st year of life Search Limits

9. Review Developed by George Engel Holistic approach to patient care Examined interplay among the biological, psychological, and social aspects of disease We used the domains of this model to organize our findings Biopsychosocial Model

10. Review Nearly uniformly negative Time demands likely cause of poor health maintenance Stress plays a direct part – but can’t explain everything Telomere shortening w/time providing LTC Mothers of VLBW have decreased lymphocyte proliferation Independent of anxiety Access to health care may inflate reporting Summary - Physical

11. Review Higher rates of depression, anxiety and PTSD symptoms May improve with time Some evidence of personal growth Siblings impacted as well Siblings stressed, depressed; describe home as “tense” Summary - Psychological

12. Review Results mixed Familial/marital strain increased, family life disrupted Some couples reported stronger relationships No increase in divorce rate Sibling resentment Summary - Family Function

13. Review Consistently negative impact Higher rates of unemployment, underemployment and lower incomes Women > men Negative effect on sibling schooling Summary - Income, Education

14. Review Despite unique and important rewards, there is a serious downside to parenting high-risk neonates All three biopsychosocial domains are affected The sickest, most time-demanding children, and the families with the least support are most at risk Discussion

15. Themes Women nearly always primary caregiver Bore disproportionate burden As caregiver they are primary contact with medical team Provides opportunity for medical team to intervene on caregiver’s behalf Impact on Women

16. Themes Support services had positive impact across all three biopsychosocial domains AAP: “Social support is essential for success of parent’s adaptation” Pediatricians encouraged to “address parents’ need for support services” Should assess for signs/symptoms of dysfunction Role of the social worker is paramount Support Services

17. Themes Programs aimed at reducing parenting stress are effective Shown in all three biopsychosocial domains Teaching hospitals and tertiary-care facilities should make efforts to provide services for these families Pediatricians and SW need to be aware of them Interventions

18. Limitations Few studies focuses on infants at the edge of viability or severe neurodevelopmental disability Likely to see far greater negative impact amongst this group Eventual outcome more difficult to predict Severity of Illness

19. Limitations Large number descriptive, no control Very little focus on siblings People whose greatest portion of their life will be impacted Design

20. Impact on Parental Counseling Strict Interpretation: only effects on infant considered Can result in severe, far-reaching negative effects on the family Familial effects important inasmuch as they affect infant Siblings interests still at risk Familial effects as external constraint Best Interests

21. Impact on Parental Counseling If one assumes that decision makers do not strictly adhere to the “best interests” standard Need this information to make informed, autonomous choices as part of any non-resuscitation or withdrawal of care discussion Are Parents following the Best Interests Standard?

22. Impact on Parental Counseling Participation in social support mechanisms should be encouraged Should begin while infant still in-house Advocate for intervention programs to reduce stress on families Early identification of biopsychosocial dysfunction PCP frontline in referral and assessment of efficacy Anticipatory Guidance

23. Questions?

25. Physical Health • Elissa S. Epel et al. • Measured telomere lengths of mothers of chronically ill children • Duration of caregiving inversely related to length of telomere, telomerase activity, directly related to oxidative damage

26. Physical Health Jamie Brehaut, Parminda Raina et al. Canadian caregivers of children with CP Worse physical health Migraines, headaches, heart disease, CA Health influenced by child behavior, caregiving demands, family function

27. Physical Health Patricia Kuster et al. Mothers of vent dependent children Examined health promoting behaviors Increased substance abuse, low scores on nutrition, exercise, relaxation and general health promotion Functional status, maternal coping had impact Ute Thyen et al. Mothers of tech dependent children Increased complaints of pain, lower vitality

28. Psychological Health Michael Hynan et al. Mothers of neonates requiring NICU care More PTSD symptoms vs control No effect on cognition Infant birth weight had strongest influence Diane Holditch-Davis, Margaret Miles, et al. Mothers of VLBW or ventilated infants At serious risk for depression Worse if tech dependent Rehospitalization greatest risk factor

29. Psychological Health Lynn Singer et al. Mothers of high-risk (+ BPD) and low-risk (- BPD) VLBW infants vs term controls VLBW moms with greater distress Lower developmental scores risk factor Resolved by 3 years for LR, by 8 years for all Major limitation – infants with grade III-IV IVH were excluded

30. Psychological Health Leslie Halpern et al. Mothers of VLBW infants vs term controls No difference in stress between both groups Higher levels of stress in mothers of sick VLBW vs healthy VLBW Infant behavior associated with stress

31. Psychological Health Maureen Hack, Nancy Klein, Gerry Taylor Families of <750 g and 750-1500 g vs term Greatest rates of distress, stress, adverse family outcomes in <750 g Lower SES, neurodevelopmental outcomes assoc.

32. Psychological Health Barbara Montagnino (TCH) Caregivers of children with trachs and GT Higher rates of anxiety and personal strain Brehaut Caregivers of children with CP Higher rates of emotional disturbances Thyen Mothers of tech dependent children Increased rates of depressive symptoms Illness severity, family support

33. Family Function & Stability Franco Carnevale et al. Families with vent assisted children 2-5y Parents felt they had no real choice Dichotomy of experiences “Worth every bit of effort” “80% of couples end up separated” “Live with the idea that…she’ll be gone” Separation from society, isolated, little support Siblings expressed resentment towards sick sibling, parents

34. Family Function & Stability Montagnino Caregivers of children with trachs and GT Reported frequent disruptions of family life Parents were adept at seeking social support

35. Family Function & Stability Singer Mothers of HR and LR VLBW Less partner consensus vs term mothers Less child-parent conflict Greater family strain No difference in divorce rates, family cohesion or marital satisfaction

36. Brehaut Caregivers of children with CP Less likely to work for pay If employed, less likely to work full-time Lower income Income, Education & Employment

37. Thyen Mothers of tech dependent children More likely to quit work, esp. if single Less likely to use daycare Lower income Higher uncovered medical costs Income, Education & Employment

38. Montagnino Caregivers of children with trachs and GT Likelihood of accepting social support directly associated with severity of economic impact Singer Mothers of HR and LR VLBW Mothers achieved fewer years of education after birth of child Income, Education & Employment

39. Saroj Saigal Families of former ELBW at 22-25 years Born between 1977-1982 Surveyed all three domains Physical/Psychological: no difference Family function: no difference, ELBW w/NSI w/less dysfunction Income: ELBW with (-) effect on work Limitations: middle or upper SES, mean 29 wk, The Ontario Cohort