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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. Objectives. Review of consequences to family of providing long-term care for high-risk infants

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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


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


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



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



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


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


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



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


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


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


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


Results mixed

Familial/marital strain increased, family life disrupted

Some couples reported stronger relationships

No increase in divorce rate

Sibling resentment

Summary - Family Function


Consistently negative impact

Higher rates of unemployment, underemployment and lower incomes

Women > men

Negative effect on sibling schooling

Summary - Income, Education


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



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


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


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



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


Large number descriptive, no control

Very little focus on siblings

People whose greatest portion of their life will be impacted


impact on parental counseling
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

impact on parental counseling21
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?

impact on parental counseling22
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


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
physical health
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

physical health27
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

psychological health
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

psychological health29
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

psychological health30
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

psychological health31
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.

psychological health32
Psychological Health

Barbara Montagnino (TCH)

Caregivers of children with trachs and GT

Higher rates of anxiety and personal strain


Caregivers of children with CP

Higher rates of emotional disturbances


Mothers of tech dependent children

Increased rates of depressive symptoms

Illness severity, family support

family function stability
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

family function stability34
Family Function & Stability


Caregivers of children with trachs and GT

Reported frequent disruptions of family life

Parents were adept at seeking social support

family function stability35
Family Function & Stability


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


Caregivers of children with CP

Less likely to work for pay

If employed, less likely to work full-time

Lower income

Income, Education & Employment


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


Caregivers of children with trachs and GT

Likelihood of accepting social support directly associated with severity of economic impact


Mothers of HR and LR VLBW

Mothers achieved fewer years of education after birth of child

Income, Education & Employment

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