Parenting the prematurely born child: Pathways of influence

Parenting the Prematurely Born Child: Pathways of Influence Margaret Shandor Miles and Diane Holditch-Davis

Recognizing the importance of parents in the lives of preterm infants, investigators and clinicians have increasingly focused on the needs of parents during the period when their infant is hospitalized in a neonatal intensive care unit and the impact of this experience on their subsequent parenting. The purpose of this report is to summarize research findings from over two decades of research, present a framework for understanding the various influences on parents of prematurely-born children, and suggest clinical interventions that are important in helping parents both in the hospital and after discharge. Copyright �9 1997 by W.B. Saunders Company

R ecognizing the importance of parents in the lives of pre term infants, investigators

and clinicians have increasingly focused on the needs of parents during the period when their infant is hospitalized in a neonatal intensive care unit (NICU) and the impact of this experience on their subsequent parenting. Early research focused on two major issues for parents during the infant's illness: the impact of separation on the parent-child relationship 1-3 and the emotional response of parents, depicted as a c r i s i s . 4

Since that time, the research has moved beyond separation and parental crisis toward a wholistic unders tanding of these early experiences and their influence on parent ing the prematurely- born child. This research has been conducted by investigators from diverse disciplines such as medicine, nursing, psychology, and social work. As a result, the publications are in widely diverse journals and publications. It is timely that the results of over two decades of research be brought together. The purpose of this repor t is to summarize selected research findings related to parents of premature infants, present a framework for understanding the various influences on parents of prematurely-born children, and

From the Health of Women and Children Department, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC. Supported in part by grants from the National Institute of Nursing Research, National Institutes of Health, grants no. NR02868, NR03962, and NR01894. Address reprint requests to Margaret S. Miles, School of Nursing, CB 7460, The University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7460. Copyright �9 1997 by W.B. Saunders Company O146-0005/97/2103-0006505. 00/0

suggest clinical interventions that are important in helping parents both in the hospital and after discharge.

The Response o f Parents

Emotional Impact

In the 1960s, Caplan and his colleagues hypothe- sized that the birth and hospitalization of a preterm infant may constitute an emotional crisis for parents. 4'5 To test this crisis theory, 30 families were studied intensively over a 12-week period following the birth of a pre term infant. While the question of whether or not parents experienced an acute crisis was not answered, these investigators did identify four tasks: (1) hoping while preparing for the possible loss of the baby; (2) acknowledging feelings of failure; (3) resuming the process of relating to the baby; and (4) learning how a premature differs from a normal baby in terms of special needs and growth patterns.

Since that time, a number of investigators have measured various emotional responses in- dicative of psychological distress in parents of premature infants. Choi 6 found that mothers of infants with lower birth weight had more anxiety and depression. Miles et al 7 found that state anxiety scores of parents of newly admitted preterm infants were similar to those of patients with anxiety reactions or students exposed to a stressful film. Parental percept ion of infant severity was significantly related to anxiety, s Gennaro, Brooten, and their colleagues also identified high levels of anxiety and depression in mothers of pre term infants. 9ql Thompson et a112 found

2 5 4 Seminars in Perinatology, Vol 21, No 3 (June), 1997: pp 254-266

Parenting Prematurely Born Children 255

that, at the time of the preterm birth of a very low birth weight (VLBW) baby, almost half of the mothers were highly distressed as measured by the SCL-90R. This distress was not a function of the child's birth weight, gestational age, or acuity of illness. Recently, Meyer et al,as using the SCL-90-R with mothers of preterm infants, found that 28% of the subjects met the criteria for clinically significant psychological distress. Younger maternal age was the only significant predictor of distress.

In addition, a number of small descriptive studies involving semistructured interviews or descriptive questionnaires have been conducted over the past 20 years. Harper et ala4 reported that parents of preterm infants displayed a high level of anxiety throughout the infant's hospitalization. Blackburn and Lowen ~5 reported that both grandparents and parents experienced shock at the initial appearance of the infant and feelings such as anxiety, unhappiness, guilt, failure, disappointment, grief, fear, frustration, loss of control, envy, and helplessness. Pederson et a116 found that having a preterm infant was emo- tionally stressful for most mothers even if the infant was not ill. Mothers reported feeling emo- tionally upset, disappointment, alienation, re- sentment, and concerns about survival and long- term prognosis.Jeffcoate et al a7 found that mothers of preterm infants reported more anxiety, depression, sadness, failure, shame, guilt, fear, helplessness, and inadequacy than mothers of fullterm infants. They also experienced a loss of self-confidence and self-esteem related to their separation from the baby. Trause and Kramer 3 also found that preterm parents cried, felt helpless and guilty, and worried about losing touch with reality more than mothers with healthy full- term infants.

In a larger, longitudinal study, Affleck et al TM

followed 114 mothers and 60 fathers of preterm infants for 30 months following birth. During hospitalization the parents reported experiencing distress, feelings of detachment, uncertainty, and regret. Pleasurable feelings such as love were also reported. More recently, Castee119 conducted interviews with mother-father dyads of preterm infants in which he directly asked them what they felt. The major emotions identified were anxiety, defined as uneasiness or uncertainty about the infant; helplessness, defined as an inability to control the fate of the infant or

effect the care; and sadness, defined as unhappiness particularly related to the infant crying. Pos- itive emotions also were reported including amazement, confidence, love, and a feeling of well-being.

Several investigators have identified feelings suggestive of a grief response. Yu et al ~~ reported that parents, particularly mothers, experienced anticipatory grief as evidenced by feelings of sadness, difficulty sleeping, loss of appetite, preoccupation, anger, guilt, and hopelessness. Fraley ~1 found that parents experienced feelings of helplessness, frustration, hope and fear, which she associated with grief. She also suggests that these parents experience chronic sorrow in that they do not fully resolve feelings related to the birth of the infant and reexperience these feelings pe- riodically during childhood. Humel and East- man ~ found that a high percentage of parents, interviewed retrospectively, reported fear, hope, helplessness, and preoccupation at the time of initial hospitalization. Many parents also experienced these same feelings when the child subse- quently was ill, had surgery, experienced developmental delay, or was left with a baby sitter.

The extent to which the emotional impact of the NICU experience continues after discharge has received only limited inquiry. Miles et al 7 reported that parents were highly anxious in the first week after admission, but their anxiety was significandy lower a week later, suggesting that the anxiety surrounding the birth and NICU admission of the infant lowers after an initial period of adjustment. Maternal anxiety, depression, and hostility, while initially high, were found to subside by 9 months after discharge by Brooten et al. 9 Thompson et al ~2 reported that maternal distress levels decreased significantly between birth and 5 weeks postbirth with no further change at 6 months. However, over the course of 6 months, mothers perceived less stress related to their infant and increasing stress related to daily hassles, inadequate family support, and role conflicts. Affleck et a123 found that 6 months after discharge, most mothers had distressing memories of the NICU experience and mothers with the most painful memories also reported the least attachment to their child.

Sources o f Stress in the N I C U

Another major focus research with parents of prematurely born infants has been on identi-

256 Miles and Holditch-Davis

fying the sources and amount of stress experienced by parents related to the neonatal intensive care unit (ICU) environment. Miles et al 7'24'25 completed two studies of parent stress in an NICU. Using the Parental Stressor Scale: Neo- natal Intensive Care Unit, 26 they found that changes in the parental role and the appearance and behavior of their infant are the highest sources of stress. Parental role alteration includes feeling helpless in not being able to protect the baby, not knowing how to help the baby, separation, not being able to hold the baby, and being afraid to hold the baby. The infant's appearance includes seeing the child in pain or experiencing apnea, perceiving that the child looked fr ightened or sad, observing the small size and limp, weak appearance of the infant, seeing needles and tubes put into the child, and watching the respirator breath for the child. Staff relationship problems, repor ted by only 15% of parents, occasioned only moderate stress, and sights and sounds within the NICU resulted in only limited stress. Mothers repor ted the NICU environment to be more stressful than fathers, particularly related to alterations in the expected parental role.

Building on this research, Werceszczak e t a127 interviewed mothers of 3-year old prematurely born children and found that the mothers keenly recalled their responses to their infants' hospitalization. Thei r recall of stressors also re- volved a round alterations in their parental role and the infant's behavior, appearance, and suf- fering. It is interesting to note that 3 years after NICU discharge mothers repor ted numerous stressors related to staff behaviors, communica- tion, and caregiving, suggesting that when parents are no longer dependen t on the NICU staff for their infants' well-being, they may feel more at liberty to discuss staff issues.

That loss of the normal parental role is stressful for mothers was identified in an analysis of interviews with mothers of medically fragile infants, most of whom were sick preterm infants. Miles and Frauman 2s identified as highly stressful the struggle mothers have in negotiating their caregiving roles with nurses. Mothers and nurses both have a deep concern for the well-being of the infant, a related sense of responsibility, and over- lapping roles, but mothers find themselves un- equal partners in role negotiations and must learn strategies to negotiate successfully.

Affonso et a129 used magnitude estimation to assess 15 categories of stressors exper ienced by mothers while their infant was in the NICU. Sep- aration from the infant was the source of the greatest stress and cont inued as both a high fre- quency and high intensity item over time. This was followed by pregnancy and labor issues, emotional stress, communicat ion with the nurses, infant health concerns, and infant appearance and behaviors.

Discharge Concerns

Parents are often relieved and happy when the time comes for discharge from the hospital, but they also experience many distressing responses when they assume total responsibility for their pre term infant. A number of studies have found that, feeling little support for their parental role in the NICU, parents did not feel prepared to take on their parental responsibilities at discharge. ~~ They repor t a lack of information about the care of a pre te rm infant, particularly feeding, such as spitting, colic, and weight gain; about infections and other health problems, such as noisy breathing and recognizing illness; about normal child care issues, including understanding growth and development and when to take the baby outside; and about behavior responses like crying and sleeping. As a result, in the weeks following discharge, parents feel anxious and continue to experience fear that their infant might die because of their perceived lack of preparation to care for a baby whom they still view as sick and, as a result, make many telephone calls to their health care provider after discharge that focus on these concerns. 3~

Summary

In general, this body of research suggests that parents of infants hospitalized in the NICU, particularly mothers, have intense emotional responses. Findings are inconclusive regarding the type of emotional respones because sample sizes were generally small, few investigators used stan- dardized instruments, and the descriptive studies used a wide variety of unstandardized interviews and questionnaires for data collection. However, a synthesis of the findings from the descriptive studies suggests that the most commonly reported responses are anxiety, helplessness and loss of control, and fear, uncertainty, and worry


about the outcome for their infant. Parents also commonly repor ted guilt and shame, depression and sadness, and a sense of failure and disappointment. Few studies focused on positive feelings, but several repor ted feelings such as amazement, confidence, love, and hope. The sources of distress for parents appear to be related to the loss of their expected and desired parental role with their infant and to the appearance and behavior of their premature infant. While short- term longitudinal studies indicate that the intense anxiety of parents lowers over time, it is clear that parents cont inue to have many concerns and related anxiety when the infant is dis- charged to their care.

Impact on Parent-Child Interaction in the First 2 Years of Life

Another question, which has had only limited attention, are the long-term effects of this parental distress during the infant's illness and hospitalization and the related anxiety at discharge on parenting. Few studies used longitudinal de- signs to study the processes and outcomes of parental distress on the parenting of the child and on the parent-child relationship.

However, the findings suggest that in the first year of life, the immature and disorganized behaviors of premature infants may add to the dif- ficulties of parenting the infant. TM Premature infants are less responsive, vocalize less, avert their gaze more often, and show less positive affect than full-term infants. '''~5"4~ Mothers leave premature infants alone more, and look at, hold, smile less, and play games with them less o f t e n . 41"44 During brief interactions, mothers of premature infants work harder to initiate and maintain interactions than do mothers of full- terms, but receive fewer positive responses from their infants. 36'45-48 Thus, interactions between parents and premature infants are less mutually satisfying than those between parents and full- t e r m in fan t s . ~6'49

These interactive differences between premature and full-term infants have been found to decrease over the first year. 5~ Vasquez 52 found that parents go through three stages in their ad- jus tment to parenting a child at home: immedi- ately after discharge when parents focus on gath- ering the resources they need to care for the infant, about 3 months after discharge when par-

ents become less protective of the infant and more involved in reciprocal interaction with the infant, and at 5 months when parents see themselves as a family with the infant. However, mothers of premature infants cont inue to use different strategies to engage their infants th roughout infancy 53 and may be somewhat less involved with them. 45 In addition, these infants are less likely to engage in exploratory play, and mothers are more likely to repor t feeling overprotective. 54

Despite these differences, there are a number of similarities in parent-infant interactions between premature and full-term infants. For example, reliable rhythmic patterns and periodici- ties occur during mother-infant interactions for both prematures and full-terms, 47 and there are no significant differences in these patterns between premature and full-term infants. 55 The mothers o fprematures did not differ from mothers of full-terms in the amount of stimulation they provided while with their infants, al though they did spend less time with the infants. 42 Dur- ing feeding interactions, the behaviors of mothers of premature infants did not differ from those of full-term infants. 45 The a t tachment categories of prematurely born toddlers on the Strange Situation do not differ from those of children born at termP e~58 Thus, Goldberg 59 recently concluded that by the end of 12 to 18 months of life, the at tachment relationship of pre term infants and their parents does not differ from that of fuUterm infants.

Although mothers of premature infants have been found to have lower quality interactions with their infants than mothers of full-term, 42'45 fathers of premature infants provide more caregiving and have more positive interactions than fathers of full- term infants. 46'6~ Parke and Anderson 61 suggested that father involvement increases in premature birth, when an infant's illness leads to moderately difficult circumstances that impair the mother 's ability to care for the infant. Fathers ofprematures had significantly more positive interactions than fathers of full-term infants, although the interactive scores of the mothers did not differ. 62 In addition, in the first few months after hospital discharge, fathers of prematures provided more caregiving than fathers of full-terlTlS. 62'63 By 3 months after discharge, the amount of care provided by the two groups of fathers and their adjustment to parenting did not differ. 6a Father involvement with premature infants remains high at least through 3


years, and for African Americans, high paternal involvement is related to child cognitive out- c o m e s . 64

In summary, research suggests that parent ing the pre te rm infant may be "more work and less fun" (p 219) than parenting fullterm infants. 59 There appear to be differences and similarities in the mother-infant interaction with these infants, however, the extent to which these differences are related to parental distress during the per iod of illness is not known. Most researchers have focused soley on the interactions without consideration of the emotional state of the parent or of the link between parenting behaviors and the earlier neonatal experience. It also is not known whether the differences in parent- infant interaction are beneficial or detrimental for the development of premature infants. Be- cause the behaviors of premature infants differ f rom those of full-terms, their interactive needs may not be the same. 42'59'65

Parenting During the Preschool Years

Relatively little is known about how preterm birth affects parent ing beyond the per iod of infancy. Mothers of 3-year old prematurely born children have been repor ted to have a greater sense of vulnerability concerning their children than mothers of full-term children, and this sense of vulnerability was highest for children with continuing health or developmental problems. 66 Perception of vulnerability was associated with more behavior problems, especially in the areas of discipline, peer relationships, and self control. O'Mara and Johnston 67 found that mothers of 3-year old, prematurely born children were more likely to be overindulgent, but not overprotective, than mothers of children born at term. 67 Parents of preschool, prematurely born children have also been described as being highly concerned about health and developmental outcomes and the difficult personali- ties of their children. 6s They rated their prematurely born preschooler as weaker than siblings born at term. 69 Yet, o ther studies have found no differences in the attitudes of mothers towards prematurely born and term-born preschool- e r s . ~'70'71 Rather, for both mothers of prematures and full-terms, parenting confidence was posi- tively related to child-care experience. 7~

In a recent study, we interviewed mothers 3

years after the child's birth and found that mothers continue to have intense emotional responses to this experience and suggest that these responses may influence a style of parenting, which we labeled as "Compensatory Parent- ing".72 These mothers viewed the child born prematurely as both "special" and "normal , " and this parenting style, in which mothers at tempted to compensate the child for the neonatal experience, was a way of resolving these apparently paradoxical attitudes. The mothers in this study viewed the characteristics of a typical, prematurely born child as being much less positive than those of an average child. Thus, they clearly exhibited what has been termed in other studies as a "prematuri ty stereotype", 7s-75 and this stereotype had persisted despite 3 years of parenting a prematurely born child. However, the mothers did not apply this stereotype to their own child. Instead, they viewed their own child as an exception to the stereotype. Prematurity stereotyping by mothers of prematurely born children appears to confirm the mothers ' belief that their child is normal.

The mothers ' he ightened sense of protec- tiveness and percept ion of the child as vulnerable may be related to the percept ion of the child as "special" for having survived a very difficult experience in infancy along with residual concerns for the child's health. A number of investigators have identified a "vulnerable child syn- d rome" in parents of children who have survived a critical i l l n e s s . 66'76'77 Indeed, half of the mothers in our study repor ted high vulnerability scores.

Compensatory parenting, which involves increased stimulation, attention, and protect ion and difficulty with limit setting, probably has both benefits and disadvantages for the prematurely born child. For example, the increased maternal attention and stimulation might result in better developmental outcome for the child. On the other hand, the perceived vulnerability of these children and the need to protect them may alter their exposures outside the home, affect the mothers ' ability to set limits and raise demands on the children, and create problems with siblings who are not treated in the same manner. Mothers in our study repor ted at least one of these behaviors, and most repor ted difficulty with disciplining the child. In addition, although all but one child showed some develop-

Parenting Prematurely Born Children 2 5 9

mental or health concerns, only four children were receiving adequate early intervention services at the time of the 3-year follow-up. 7s Many had dropped out of developmental surveillance programs because of long travel times and long waits in the clinic. Fifteen of these children were referred for fur ther intervention, but only three families followed the recommendations. Most of the other 12 families said that they did not think the referral was appropriate for their child because their child was really normal. Family problems, such as maternal depression and marital discord, were also a factor in the failure to follow recommendations.

On the other hand, parents do make visits to their primary care physician. Gennaro and Stringer 79 evaluated the relationship between depression and anxiety during hospitalization and at discharge to acute care visits with the child after discharge. She found that mothers with higher anxiety and depression had significantly more acute care visits for their infant.

The extent to which premature birth affects the interactions between mothers and preschool children is unclear. One study found no difference in interactions at age 2 years, s~ However, another study found that mothers of prematurely born preschoolers used fewer suggestions and more directive statements, and their children showed less self-directed behavior than full- term children, sl These differences occurred primarily in the subset of prematurely born children who exper ienced severe medical complications. Mothers of prematurely born children were more likely to engage in vocabulary teaching than in conversation as compared with mothers of children born at term. s2 In addition, Hol- ditch-Davis and Belyea ss found that the developmental status of 3-year old prematurely born children was related to the quality of the interactions. Children showing normal IO~ lan- guage, or attentional status on average had more optimal behaviors during free play, received more social stimulation from their mothers during free play, had more positive home environ- ments, and received higher scores on a teaching interactions with their mothers.

Thus, studies conducted in the preschool period suggest that prematurity continues to affect parenting. In particular, mothers of prematurely born children perceive their prematurely-born children as vulnerable, which affects their par-

enting style. 67'6s'72 However, there is only limited research on which parenting behaviors are altered and the extent to which changes in parenting behaviors affect child outcomes. Neverthe- less, there continues to be a relationship between child developmental status and parenting. Not only are child developmental problems associated with poore r parenting, as but parents may actually worsen developmental problems through denial and unwillingness to deal with them. 7s Thus, there is a need to continue working with parents of premature infants, at least through the preschool period.

Intervention With the Parents of Premature Infants

The quality of the overall social environment and parent-infant interactions has been shown to affect the developmental and health outcomes of prematures. 6~ Thus, early intervention programs that successfully improved the developmental status of prematures have usually included activities to improve the social environment and interactions between parents and children. In the recent, multisite, randomized trial study, the Infant Health and Development Program, for example, the intervention included home visits, a developmental day care center, and parent group meetings with a coordinated educational curriculum used at both the home and center. At age 36 months, children in the intervention group not only had significantly higher mean IQ scores, 86's7 but also improved mother-child interactions. 88

The Mother-Infant Transaction Program or Vermont Infant Studies Project was designed to enable the mother to appreciate the baby's spe- cific behavioral and temperamental characteristics, sensitize her to the baby's cues, and teach her to respond appropriately t o c u e s . 89'9~ It was implemented by a neonatal nurse in the hospital before discharge and in the home after discharge. Outcomes included increased maternal self-confidence, satisfaction with mothering, and maternal perceptions of infant temperament 9~ and improved I Q s . 89 When a program of developmental intervention in the hospital and at home and counseling and parent education were provided for premature infants, the intervention group had bet ter mental and physical


development at 12 and 24 months of age and improved caregiver-infant interactions, m'~

Beckwith ~ provided a home based parent-directed intervention focused on mother-infant interaction with pre te rm infants that resulted in positive changes in maternal behavior and attitudes. Meyer et a194 educated families about infant behavior, caregiving, and community resources, while providing family support. This intervention had a positive effect on interactions during feeding and on maternal psychological well-being. Barrera et a195'96 conducted a longitudinal study of home visits to low birth weight infants and their parents. These visits focussed on parental education and problem solving. The intervention group had higher expressive lan- guage, comprehension, visual motor skills, and personal-social skill in these at-risk infants, and improved home environment s c o r e s . R o s s ~ studied a home-based parental educational program that resulted in higher Bayley scores and improved home environment.

All of these successful early intervention research programs were multidimensional and provided parent support, as well as educational services. By contrast, the intervention and developmental surveillance services currently provided in most communities focus largely on the child's needs and on teaching parents. Support- ive interventions that focus on the primary caregiver are not generally part of these services. Thus, there is a need for the neonatal care providers and primary care practitioners to more fully address the needs of the parents.

Conceptual Framework

Based on our review of the literature and our own research with parents of prematurely-born children, we present a model that might be use- ful in guiding clinical interventions, as well as future research with parents (see Fig 1). In our model, we suggest that preexisting and concur- rent personal and family factors, such as parental age, gender ethnicity, socioeconomic status, employment situation, personality traits, family con- figuration, level of social support, and previous loss of an infant or child are brought into the situation when an infant is born prematurely. Some of these factors, such as financial distress or the employment situation, may be aggravated by the illness. For example, one mother in our

study was hassled by her employers because of her requests to change her work hours so she could visit her critically ill infant. Because she was carrying the family insurance, she could not change jobs or stop working. Thus, it is important to assess the impact of factors such as these when working with parents. Another mother had to quit work to care for her premature infant, thereby losing her health insurance and ability to pay for her own hypertensive medi- cations.

Prenatal experiences such as a history of infer- tility, high-risk pregnancy, problematic labor a n d / o r delivery, and perceptions of the premature delivery as expected or unexpected also have an influence on the emotional response of parents and their subsequent relationship with their child. A mother we interviewed 3 years after the birth of her daughter cont inued to feel guilty about her child's prematurity because she had suffered from severe preeclampsia, which left her seriously ill. Again, it important to ask parents about their prenatal history. However, just getting the information in a few words is not sufficient to understand the impact of these events. A better approach is to allow the parents to tell you their story about the experience in their own words and timing.

Once the preterm infant is born and admitted to the NICU, there are three major interrelated aspects of the situation that cause great distress: (1) the loss of the normal parenting role; (2) the illness severity, treatments and appearance of the infant; and (3) their concerns about the outcomes for the infant. Parents have little control over their infant and little opportunity to provide the normal parental caregiving they had expected. Instead, they often feel helpless and must struggle for opportunit ies to exert their parental role. No matter how much they are able to parent their infant, all parents experience separation for hours, days, or weeks, depending on a number of personal and family variables. Even mothers who were not able to visit their infant frequently due to distance, cost, and care of other children repor ted great distress during the period of separation. Concerns and uncertainty about the infant's well-being and eventual outcome loom large in parents minds. This, coupled with their distress at seeing their tiny, wrinkled baby surrounded by medical equipment and tubes; noticing color changes such as jaundice,


Preexisting end current personal and

.family factors

I r'.:e'.:;F" L ; labor and I delivery I experiences | m m m m ~ l m

z~ I pr term I I ~' rant I

~ Admission to NICU

normal concerns

parental about

outcome

~ Emotional J Illness distress | ~inf severity' I J a n t I Perception J treatment, and

appearances/ I Child | of child I Altered I I health I

I I parent-child I--I and J I relationship | |developmentall �9 ' 1 outcomes I

i Compensatory J parenting I

Figure 1. Pathways of influence in parenting prematurely born children.

pallor, and cyanosis; and witnessing episodes of apea or respiratory distress is highly distressing to parents.

The emotional responses of parents include feelings of helplessness and loss of control, fear, guilt and shame, and a sense of failure and disappointment. These feelings result in a loss of self- confidence and self-esteem, anxiety, and depression. However, parents also experience intense hope that their baby will survive and be normal.

These early neonatal experiences result in a different orientation to parenting. Parents may view the prematurely-born child differently than a healthy child born at term. Competing images of the child include "special" for having survived and suffered; "vulnerable" because of the lingering fears about sequelae; and "normal" because of the intense desire to forget the past and move on with the child. This can lead to a compensatory parenting style where parents try to compensate the child by overindulgence, fail- ing to set age appropriate limits, and denying ongoing health or developmental problems.

This compensatory parenting style may mani- fest itself in an altered parent-child relationship. In early infancy, mothers may be active in initiat- ing and stimulating the child, but show lower levels of mutually positive reciprocal interaction. In the preschool period, mothers may engage in

behaviors that include overprotection, inconsistent discipline, and spoiling and babying the child. This altered parenting style may ultimately have an impact on health and development when parents ei- ther ignore or magnify health problems or developmental delays, when children are not provided consistent and clear limits to their behavior, and when children's opportunities are diminished by protective behaviors of the parent.

Although this is a preliminary model that needs further research validation, a number of mothers of preterm infants have strongly vali- dated the applicability of the model to their own situations. One mother who read a preliminary report about the model wrote back to tell us about how her story closely paralleled the model. As a result of reading the report, she became aware of lingering intense feelings related to her prematurely-born child's illness and hospitalization and linked these feelings to her altered parenting style with her daughter. This mother sought brief psychotherapy to help her deal with her feelings and alter her parenting style and thanked us for helping her become a "normal mother."

Implications for In tervent ion

During the infant's hospitalization in the NICU, it is important that staff be sensitive to each par-

2 6 2 Miles and Holditch-Davis

ents unique and differing perspective and response. This entails getting to know each parent as an individual and trying to uncover the factors that influence their responses and their needs. With so many staffworking with parents over the course of a week or month, this is difficult to do without good communicat ion among staff about each family's unique situation.

Likewise, it is important to aim communica- tions about the infant's diagnosis and prognosis to the parents ' level of understanding, needs, and values. No matter how healthy the baby is viewed by the health care team, many parents have told us in our research interviews that they viewed the infant as mortally ill, were quite pessimistic and, as a result, often heard only the nega- tive information. On the other hand, o ther parents have told us that, despite having an infant who was seriously ill, they held out intense hope that their child would survive. Some of these parents held strong beliefs in the value of prayer and felt that only God was in control. In addition, there were parents who truly did not have the intellectual capacity to understand what they were told. Thus, it is essential that health care providers balance the information about chances for survival with realistic optimism. When communicat ing with parents, it is advis- able to ask them their views about the infant's condit ion and chances for survival. Also ask them what obstetricians, family physicians, family members, ministers, and friends have told parents, as these individuals may instill an overly pessimistic or optimistic view of the situation that must be overcome. If the parent seems unrealisti- cally optimistic and hopeful, it is important for the staff to have respect for their intense need for hope. We have interviewed two mothers who described their experience as being "badge red" by the health care team with bad news and a request to stop treatment. These mothers lost trust with the health care team, but cont inued to fight for their infant's right to care. Both of these children survived and are functioning within the normal range at preschool age.

One of the most difficult situations is that of the infant of Jehovah's Witness parents who needs a blood transfusion. A common practice is for physicians to turn to the courts for custody of the child in order to treat. From the parent 's point of view, this not only violates their religious values, but also totally destroys their trust in the

health care team who are now seen to view them as unfit parents. One family whom we interviewed, as a result, no longer trusts any health care provider.

Communicat ion about the baby's condition needs to be ongoing. As diagnoses and progno- ses change, parents must be informed. One mother in our studies was told that her infant had hypoplastic lungs and that his condition was fatal. On the day of discharge, she was puzzled by the casual approach to discharging her infant with a fatal condit ion and inquired about the lung problem, only to be told that the staff had long ago decided that the infant did not have it. Ongoing and honest communicat ion with parents is best done by a small group of providers whom the parent get to know and trust. Thus, continuity of care by a physician, primary nurse, neonatal nurse practitioner, clinical nurse specialist or social worker is essential in helping parents. Throughou t hospitalization, listening is as important an intervention as giving information. It is particularly powerful to ask parents, over and over, to tell their stories about their infant's birth and their experiences during hospitalization.

It is also important to be sensitive to how each individual parent views their infant's appearance and the overall aura of the NICU. Staff who work daily in the NICU with very sick infants some- times lose their sensitivity about what this environment looks like to parents. Of particular concern is the infant's wrinkled appearance, color changes, respiratory difficulty, and equipment and tubes on and surrounding the child. Ac- knowledging that the parents may find these experiences difficult, allowing the parent to share their feelings about their infant's appearance, and normalizing the baby's appearance and treatments for the parent are vitally important interventions to the parent that may help them move from viewing their infant as mortally ill or very abnormal to viewing their infant as small and sick, but normal for the situation.

Of utmost importance to parents is that we identify f rom the m o m e n t of admission special roles for them in regard to their infant 's needs. During the early critical periods, parents can be shown the impor tance of gently touching the infant, and talking and singing to the child, even bringing in tapes of their voice. As the child improves, interventions such as kangaroo


care, breast feeding, gentle touch, holding, and rocking help them to feel involved and important. 98-1~176 Likewise, we need to respect parents a t tempt to be " in charge" as a parent . Some parents may be very vigilant in visiting and in watching staff to ensure that their child gets the at tent ion and care he or she needs. While this can be disconcert ing to staff, it is an extremely impor tant role for parents and helps them establish their parental role. Allowing parents to make decisions about their child's care in domains that they can control, such as the timing of feeding, bathing, or rest periods, is extremely helpful in reinforcing their importance as a parent .

On the o ther hand, not all parents want to be in control or even very involved with their infant. We have identified some mothers who keep a certain distance from the infant and thereby visit sporadically because they are afraid to get attached to a baby who might die. Other reasons for this behavior include discomfort in the hospital environment and a belief that health care professionals have the best expertise to help their baby during acute illness, whereas parental responsibilities begin when the baby comes home. Financial limitations, responsibilities for o ther children, and jobs also make it difficult for low-income families to get to the hospital.

Fathers of prematurely born infants are often ignored once the mother recovers from delivery and is on the scene. Very little is known about fathers responses and needs. Thus, we need to make a special effort to assess what each father is experiencing and make sure that special attention is focused on the needs and responses of fathers. Research has suggested that fathers of preterm infants may be more involved with their infants than fathers of normal infants. 6~ Be- cause of their potentially important impact on development of these at-risk children, this level of involvement needs to be capitalized on so that they remain involved following discharge.

Finally, the findings point to the need for ongoing support of parents of prematurely-born children by health care professionals that continues for several years after discharge. Although many health professionals assume that parental distress and concerns disappear shortly after hospital discharge, findings from various studies suggest that this may not be SO. 21"23'27'72

Our review of the literature suggests that par-

ents need special support and much information about normal infant care issues such as feeding, growth, and elimination, as well as information about the special and unique needs of the prematurely born child. In addition, seemingly mi- nor health problems such as respiratory infections that cause difficulty breathing and hernias that need watching and eventual surgery are highly distressing to parents and should not be taken lightly. 72

Another aspect of support to these parents is their need for a "debr ief ing" in which they have an opportunity to discuss and sort out the impact of the NICU experiences on their relationship with their child and their parenting. Even 3 years after their children had been hospitalized in an NICU and with children who did not have an obvious handicap, mothers in our studies still had issues from their NICU experiences that they openly and eagerly wanted to discuss during interviews. This "debr ief ing" could be accom- plished at the time of discharge, during outpa- tient follow-up care contacts with health professionals, at the time of routine developmental surveillance, or during follow-up public health home visits.

Mothers also need ongoing assistance and guidance in dealing with the parenting of these children, particularly issues related to compensa- tion, normalization, stimulation, attention, overprotection, discipline, and the impact on the family. However, to be most effective, such interventions need to focus on the mother ' s own concerns, and follow-up should cont inue at least through the early preschool years. TM Mothers of children with more serious developmental concerns also should be referred to an early intervention program. However, it is imperative that these programs focus on the needs of infants and their parents.

Mothers who show signs of depressive symp- toms should have fur ther assessment and intervention. Mothers of premature infants exhibit higher rates of depression than mothers of full- terms. 912 It is well known that depressed mothers are less responsive and affectionate to their infants, a~176 and poor maternal psychological well- being, particularly depression, is related to poor child developmental outcome, a~176 Mothers who appear depressed need additional support and listening to their concerns and feelings. Reg- ular te lephone follow-up or home visits that fo-


cus on listening to the mother and her needs may be effective in reducing depression. How- ever, antidepressents may be used with pro- longed depression. Psychotherapy is seldom needed, if adequate support is provided, but may be needed by some mothers. One mother who recently completed our longitudinal study of parenting medically fragile infants reported back to tell us how important it is to help mothers of sick infants in the years following discharge and indicated how much the interviews, which were part of the data collection, helped her abate deep feelings of depression.

Health care professionals, especially neona- tologists, neonatal nurses, social workers, and family physicians or nurse practitioners have an important, but challenging, role in helping parents of preterm infants during hospitalization and following discharge. This family centered care 1~ must include appropriate and timely interventions that help parents deal with their own needs and distress and that help them move from being the parent of a very sick infant to parenting a child with both normal and special needs. Such interventions can make a difference in the development and health outcomes of the child, as well as those of the entire family.

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Parenting the prematurely born child: Pathways of influence

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