CLINICAL PRACTICE

AbstractParenting the high-risk infant presentsadditional challenges and stressors tofamilies struggling to cope withraising children. Parents of high-riskinfants have higher anxiety levels anddepression is more common. Becausea positive home environment is crucialto maximize the high-risk infantspotential, medical professionals mustsupport these parents. Nursinginterventions to maximize parentingskills and improve outcomes arediscussed.

2003 Elsevier Inc. All rightsreserved.

Parenting theHigh-Risk InfantBy Pat Hummel, MA, RNC, NNP, PNP

Parenting is a challenging process under ideal circumstances. The qualityof parenting and the home environment are crucial factors in any childsoutcome, and even more important in the outcome of the high-risk infant.Increased stressors and challenges are faced by parents of an infant in theNeonatal Intensive Care Unit (NICU) and after discharge. The uncertainty oftheir childs future, strains every aspect of their life. This article reviewsparental reactions to having a baby in the NICU, parental reactions followingdischarge, and nursing interventions that promote positive parenting. Researchhas mainly focused on maternal reactions; less is known about paternal reac-tions and stressors.

Parenting a Baby in the NICU

During pregnancy most parents envision an ideal labor and delivery, re-sulting in a perfect infant who grows up without problems. This is neverentirely the case when a baby is admitted to the NICU. Many of these parentsexperienced a complicated pregnancy, labor, and delivery. The baby theyenvisioned is often not the baby they see in the warmer bed or incubator.Feelings of grief, loss, and fear are common.1 The up and down roller-coasterride that parents of a very premature baby experience is very difficult to endure.The parent is anxious about their babys survival and their long-term outcome.Parents feel helpless, confused, and frightened.24 Research has shown thatmothers of preterm infants experience more severe levels of psychologicaldistress in the neonatal period than mothers of full-term infants.5,6

Depression

Postpartum depression and psychosis can be diagnosed after any birth,whether high-risk or normal. The stress of parenting a baby in the NICUhas the potential to accentuate depression. In most studies, postpartum depres-sion has been found to be more common in mothers of premature infants andin mothers of multiples.6,7 Prenatal depression, low social support, life stress,low socioeconomic status, low self-esteem, childcare stress, prenatal anxiety,poor marital relationship, difficult infant temperament, and unplanned/un-wanted pregnancy are significant predictors for postpartum depression.8

The prevalence of maternal depression has been investigated in mothers ofpreterm infants.9 In one study, the preterm infants were grouped according torisk: one group was at risk for the development of cerebral palsy because ofhead ultrasound results, and the other group was not considered at risk for thedevelopment of cerebral palsy. A full-term group was also studied for compar-isons. Unlike many other studies, equally high levels of depression were foundin all three groups of mothers, regardless of birth status, prediction of disability,

From the Ronald McDonald ChildrensHospital, Loyola University Medical Center,Maywood, IL.

Address reprint requests to Pat Hummel, MA,RNC, NNP, PNP, Ronald McDonald ChildrensHospital, Loyola University Medical Center, 2160South First Avenue, Maywood, IL 60153.

2003 Elsevier Inc. All rights reserved.1527-3369/03/0303-$30.00/0doi: 10.1053/nbin.2003.36114 Newborn and Infant Nursing Reviews, Vol 3, No 3 (September), 2003: pp 8892 88

or presence of actual disability, throughout the first year ofthe childrens lives. Depressed mothers were found tohave significantly higher levels of psychosocial stress.Early developmental intervention had no effect on theprevalence of depression in mothers whose children wereat risk for the development of cerebral palsy.

However, in another study, depressive symptoms inmothers of preterm infants at discharge were found to beassociated with less accurate knowledge of infant devel-opment.10

Maternal depression is detrimental to the developmentof the infant and growing child. Mothers with depressionshow less affectionate behavior, less responsiveness toinfant cues, and withdrawal with a flat affect. Some de-pressed mothers are hostile and intrusive with their in-fants.8 Infants of depressed mothers tend to be fussier,more discontent and avoidant, make less positive facialexpressions and vocalizations, and tend to have more sleepproblems. Studies show that children of depressed mothersare more likely to have behavior problems, insecure at-tachment, and cognitive deficiencies.8,1113

Concerns About Future Development

Previous articles in this journal have summarized theoutcomes of infants in the NICU, particularly prema-ture infants. Parents have good reason to worry! In somecases, parents have been told to expect major disabilities,as would be the case when intracranial hemorrhage orbirth asphyxia is severe, or retinopathy of prematurity withvisual loss. In many cases, the prognosis is less certain,and the parents may have been informed that a wait andsee attitude is best. It is very difficult, if not impossible,to predict outcomes in most infants. In some cases, theparents leave the NICU without having been informed ofthe developmental risks their child faces. Some parentsseek this information independently; others do not. Healthcare professionals providing this information may have apessimistic attitude or be overly optimistic. These ex-tremes may influence the parental perception of theirchilds potential.14,15 In addition, a parent, or anyone understress, filters incoming information. The parent may hearand remember only portions of the information given tothem. Parents initially receive information passively buttransition to actively seeking information. Nurses and fam-ily are important sources of information for parents.16Many parents are turning to the internet for information.Table 1 shows a list of websites for parents of prematureinfants. In addition, there are many books available forparent support and information. Some are written by par-ents; others by health professionals. Table 2 shows a list ofbooks written for parents or siblings.

Developmental problems are often classified as eithermajor or minor. While severe cerebral palsy or blindnessis certainly perceived by all as a major disability, theparent and child dealing with a minor developmentalproblem such as a learning disability does not perceive thisas minor. Some parents may perceive a motor disabilitywith normal cognition fortunate, whereas to other parents,motor disabilities are more concerning than cognitive def-icits.17 Some parents are more accepting of disabilitiesthan others. Occasionally, parents consider normal devel-opment to be bad news, because they expected an abovenormal or gifted child.

Discharge from the Hospital

Although the day of discharge is one of the happiestdays in a parents life, it is also a day of anxiety.Depression may also be present at this time.5,6 This isespecially true if the baby is being discharged with addi-tional technology, such as an apnea monitor, medications,and oxygen. Most parents are concerned about their abilityto care for their infant. These concerns are greater whenthe parent is expected to be both nurse/caregiver andparent. This anxiety usually diminishes as the babys con-dition improves, and the equipment is discontinued.18

Impact of Home Environment on Development

The home environment has been found to be a criticalfactor in the outcome of any infant, but particularlyin the outcome of the premature infant. The plasticity of

Table 1. Websites for Parents of Infants in the NICU

http://www.babyzone.comhttp://www.baby-place.com/premature.htmhttp://www.familyvillage.wisc.eduhttp://www.growingstrong.orghttp://kidshealth.orghttp://www.lalecheleague.orghttp://www.nurtureplace.comhttp://www.pediatrics.wisc.edu/childrenshosp/parents of

preemieshttp://www.preemie.comhttp://www.preemies.orghttp://www.preemieparents.comhttp://www.preemieparenting.comhttp://www.preemietwins.comhttp://premature-infant.comhttp://www.prematurity.orghttp://rainforest.parentsplace.com/dialog/get/npremature.htmlhttp://www.snuglbuds.com/premature.htm

Parenting the High-Risk Infant 89

the premature infants brain contributes to adversechanges in brain development caused by many factors,including the abnormal NICU environment, brain hem-orrhages, painful experiences, inadequate nutrition, andmaternal separation. However, this plasticity also al-lows the infants brain to overcome or modify theseearly adverse forces if the baby is discharged to aloving, nurturing, and enriching environment.19

Socioeconomic status, maternal depression, and mater-nal age have all been shown to be predictive of the infantsdevelopment. The quality of care-giving and the homeenvironment are critical factors in the development of thepremature infant.20,21

Parental Reactions as the Child Grows

There is little research on parental reactions and well-being beyond the neonatal period. Parents of healthy,normal infants born prematurely express increased anxietyat times of stress in their childs life compared withfull-term cohorts. Parents of premature infants react dif-ferently to stressors such as illness, surgery, behaviorproblems, and perceived developmental difficulties. Theseevents resurrect the feelings of helplessness, frustration,and fears for the life and future of their child, similar totheir reactions while the infant was in the NICU. Thesereactions that re-surface have been labeled as chronicsorrow.22 Parents of premature infants may not fully re-solve their grief, even if their infant is developing nor-mally, similar to parents of a disabled child. However,parents indicated that they still have feelings of hopeduring these difficult times.1

The concept of chronic sorrow was first described withparents of children with developmental delays such asDown Syndrome. Chronic sorrow is a term used to de-scribe the fact that feelings of grief and sorrow do notentirely resolve when raising a child with developmentaldifficulties.23 Feelings of grief and sorrow resurface attimes during the childs development, especially at timeswhen the child, if not disabled, would be entering a newphase in life, such as high school graduation. Parents ofpremature infants with developmental delays and chal-lenges may also exhibit chronic sorrow reactions.

Parents of premature infants with or without disabilitiesmay question their reactions, wondering why their feelingof grief and sorrow persist or resurface. In addition, othersmay question these chronic sorrow reactions, adding ad-ditional parental stress. Parents are comforted when reas-sured that these feelings are common.

Differences in parenting styles are sometimes apparentin parents of preterm infants. Some mothers strive toprovide special experiences and avoid others in an attemptto compensate for the neonatal experiences. This is termedcompensatory parenting.24 The vulnerable child syndromeis also described in connection with parenting preterminfants. This syndrome consists of an increased parentalperception of childs vulnerability to illness or injury.25,26

In recent research, mothers of very low birth weight(VLBW) infants were followed for 3 years.6 These VLBWinfants were classified as either high-risk (a diagnosis ofbronchopulmonary dysplasia) or low-risk (no bronchopul-monary dysplasia). A full-term group was also includedfor comparison. Mothers of VLBW infants showed morepsychological distress than mothers of term infants at 1month of age. At 2 years of age, the mothers of low-riskVLBW infants did not differ from term mothers, whereas

Table 2. Books for Parents of Premature Infants

Books for adultsBORN EARLY: A PREMATURE BABYS STORY; byLida Lafferty; Fairview Press, 1998BREAST FEEDING YOUR PREMATURE BABY; byGwen Gotsch; La Leche League Intl, 1999CARING FOR YOUR PREMATURE BABY: ACOMPLETE RESOURCE FOR PARENTS; by Alan H.Klein and Jill Alison Ganon; Harper Reference, 1998THE PREEMIE PARENTS COMPANION: THEESSENTIAL GUIDE TO CARING FOR YOURPREMATURE BABY IN THE HOSPITAL, AT HOME,AND THROUGH THE FIRST YEARS; by Susan L.Madden; Harvard Common Press, 1999YOU ARE NOT ALONE: THE NICU EXPERIENCE;Childrens Medical Ventures, Inc., 1998COMING TO TERM: A FATHERS STORY OF BIRTH,LOSS AND SURVIVAL; by William H Woodwell,University of Mississippi, 2001CHILDBIRTH, TREATMENT, AND PARENTING; byFrank P. Manginello and Theresa Foy DiGeronimo; JohnWiley & Sons, 1998YOUR PREMATURE BABY AND CHILD: HELPFULANSWERS AND ADVICE FOR PARENTS; by Amy E.Tracy; Berkley Pub Group, 1999PREEMIES: THE ESSENTIAL GUIDE FOR PARENTSOF PREMATURE BABIES; by Dana Wechsler Linden,Emma Trenti Paroli, Mia Wechsler Doron M.D., PocketBooks, 2000NEWBORN INTENSIVE CARE: WHAT EVERYPARENT NEEDS TO KNOW; by Jeanette Zaichkin(Editor), NICU-INK, 2002

Books for children (ages 4 to 8 years)WATCHING BRADLEY GROW: A STORY ABOUTPREMATURE BIRTH; by Elizabeth Murphy-Melas, DianeTate (illustrator); Longstreet Press, 1996WAITING FOR BABY JOE, by Pat Lowery Collins;Albert Whitman & Co., 1990

90 Pat Hummel

mothers of high-risk infants continued to report psycho-logical distress. By 3 years, mothers of high-risk VLBWchildren did not differ from mothers of term children indistress symptoms, even though parenting stress remainedgreater. Severity of maternal depression was related topoorer child developmental outcomes in both VLBWgroups.

In a follow-up study of extremely low birth weight(ELBW) infants at 12 to 16 years of age, parents wereasked to rate the health-related quality of life for theirchildren.27 As expected, these infants were reported byparents as having a greater rate of disability than thefull-term control group. However, parents of the ELBWinfants rated the health-related quality of life of theirchildren fairly high. This indicates that parents are able toevaluate their childs health status independently of theirdisability.

Nursing Interventions: PromotingPositive Parenting

Newborn and pediatric nurses, in both inpatient andoutpatient settings, have an important role in facili-tating parenting and therefore improving outcomes. Par-ents of hospitalized children have rated nursing support asan important influence on their experiences. Frequent,honest communication is of utmost importance to parents.Parents want to trust and to feel cared about by theirchilds nurses.28

Nurses can boost parental self-esteem and confidence inthe NICU. Encouraging visitation, teaching parents how tocare for their child, and involving them in decision makingare all important aspects of this process. Parents may notvisit for many reasons, including financial difficulties,transportation problems, work schedules, and feelings offear or anxiety. Parents who have difficulty visiting areperceptive about how nurses treat them, and nonsupportivenursing behaviors causes them to visit even less.28

Parents are usually not able to interpret the status oftheir child in the NICU. Their perceptions are largelyinfluenced by the extent to which nurses appear confidentin their skills and professional in their demeanor. Parentsquickly sense a nurses unhappiness with an assignment orapparent dislike of a child and interpret these as loweringthe quality of care.28

Parents describe nonsupportive nursing actions as de-laying answers to questions, responding with annoyance,giving false or misleading information, avoiding parents,and using overly technical language. Other factors cited asbeing nonsupportive include limited parental contact/vis-iting, nurses who compete with parents for control over the

childs care, speaking to parents in unpleasant tones, andimplying that the parents are incompetent.28

The Newborn Individualized Developmental Care andAssessment Program (NIDCAP, Boston, MA), whichincorporates principles of developmental care, has beenincorporated into many neonatal units. Although a meta-analysis of the data shows that there is insufficient evi-dence to support that this improves medical and neurode-velopmental outcomes of preterm infants, most studiesshow a positive effect on parenting.29 A recent studyshowed that an individualized nursing intervention en-hanced parents ability to appraise their infants behaviorcritically and respond in a supportive manner.30

In another study in the NICU, cognitive outcomes wereimproved in infants at 3 and 6 months old when mothersreceived an intervention that provided parents with strat-egies for becoming involved in their infants care, enhanc-ing quality of interaction with their infant, and facilitatingtheir infants development.31

Kangaroo care has been shown to improve parentalinteractions with their infant.32 In one study of kangaroocare, mothers showed more positive affect, touch, andadaptation to infant cues, and infants were more alert, withless gaze aversion, at 37 weeks corrected gestational age.Mothers reported less depression and perceived infants asless abnormal. At 3 months, mothers and fathers whoexperienced kangaroo care were more sensitive and pro-vided a better home environment. At 6 months, the moth-ers were more sensitive, and infants scored higher on theBayley Mental Developmental Index.

Infant massage is another intervention that may facili-tate parent/infant interaction. A critical review of the lit-erature on massage concluded that the evidence is weakthat massage for preterm infants is of benefit for develop-mental outcomes, and wider use of preterm infant massagewas not warranted. Further study is needed in this area.33However, mothers have expressed satisfaction whentaught massage for their infants.34

Support groups are helpful for parents struggling tocope with their infants hospitalization or later in thechilds life.35 These can be organized by staff or parents.An alternative to the group approach is matching parentsto provide support for one another. Parents within the unitoften forge ongoing friendships, with some forming alife-long bond.

After discharge from the NICU, the same nursing in-terventions with parents apply in both outpatient and in-patient situations. Nurses must recognize that these parentsbear an inordinate amount of anxiety, even when the babyis doing well, and particularly when problems arise. Con-tinuing to support parents and validate their parentingskills are important. Teaching parents how to interact withtheir child, how to recognize behavioral cues, and tech-

Parenting the High-Risk Infant 91

niques to enhance development are important in any set-ting. Financial stressors are also common, because oneparent may be unable to be employed outside of the homebecause of the added responsibilities of their special needschild. Referral to social work may be indicated to deter-mine if available financial resources are being used. Rec-ognition of depression and appropriate referral to mentalhealth professionals is imperative.8

Summary

Parenting a high-risk infant is a different experiencethan parenting in a low-risk situation. Anxiety andstress levels are higher, and depression is not uncommon.Because a positive developmental outcome is dependenton the quality of the home environment and effectiveparenting, nurses must enhance parentinfant interactionand assist parents in their new role.

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92 Pat Hummel

CLINICAL PRACTICEParenting the High-Risk InfantAbstractParenting a Baby in the NICUDepressionConcerns About Future DevelopmentDischarge from the HospitalImpact of Home Environment on DevelopmentParental Reactions as the Child GrowsNursing Interventions: Promoting Positive ParentingSummaryReferences