Frank X. Placencia, M.D.Department of PediatricsBaylor College of MedicineTexas Childrens Hospital

Familial Consequences of Providing Long-Term Care to High-Risk InfantsFamilial 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

• Review recurring themes

– Effects on women

– Strategies to ameliorate these effects

• Impact on Parental Counseling

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

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

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

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

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

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

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

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

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

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

Review

• Consistently negative impact• Higher rates of unemployment, underemployment and

lower incomes– Women > men

• Negative effect on sibling schooling

Summary - Income, Education

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

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

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

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

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

Limitations

• Large number descriptive, no control• Very little focus on siblings

– People whose greatest portion of their life will be impacted

Design

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 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 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

Questions?

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

• 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 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

• 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 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 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 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 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

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 & Stability

• Montagnino– Caregivers of children with trachs and GT

• Reported frequent disruptions of family life• Parents were adept at seeking social support

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

• 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

• 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

• 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

• 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