The Alexis Foundation/Preemie-l

2^nd Annual Conference

Chicago, IL

Edward A. Martinelli, Jr.

July 27, 1999

SOCIAL SUPPORT FOR PARENTS OF BABIES IN A NICU

A Model of Social Support for Parents

of Pre-term Infants in a Neonatal Intensive Care Unit (NICU)

Edward A. Martinelli, Jr.

Auburn University

A Model of Social Support for Parents

of Pre-term Infants in a NICU

The birth of a child is recognized as not only a difficult emotional and physical experience (Aradine & Ferketich, 1990; Belsky, 1984; Hill, 1965; LeMasters, 1957) but is also seen as a developmental or life transition (Osofsky, 1982). Some have suggested that pregnancy involves a process of attachment with stages or developmental tasks These steps are: Planning the pregnancy, Confirming the pregnancy, Accepting the pregnancy, Fetal movement, Accepting the fetus as an individual, Birth, Hearing and seeing the baby, Touching and holding the baby, and Caretaking (Klaus & Kennell, 1979). The arrival of a child prematurely could be a disruption to this process. Without question, early arrival of a child is a period of difficulty for the fetus, who arrives without bodily and/or mental maturity; however, it is also a time of emotional difficulty for the parents. While studies have been conducted looking for the etiology and/or severity of parental problems, few have looked at helping and supporting the parents jointly (most have looked exclusively at the mother), and even fewer have looked at the problem through the lens of social psychology.

To become acquainted with the scope of the problem, and consequently the suggestions and justification for solutions, the paper will be organized in the following fashion. First, a description of the presentation and sequelae of pre-term labor and premature birth. Second, a brief review of the literature on parental reactions to pre-term birth and the pre-term child's (preemie's) subsequent admittance to a Neonatal Intensive Care Unit (NICU). Third, a discussion of social support concepts that may be applied to prematurity and the NICU. Fourth, a model of the experience of parents in the NICU with suggestions about potential interactions and interventions using social support concepts. Fifth, hypotheses and a model of outcome and effect. Sixth, suggestions for measurement and validation of the model. Finally, a summary of the condition, problems, and solutions.

Pregnancy on the whole carries with it expectations about course, development, and growth. Some authors have identified specific tasks or stages to the developing relationship between parent and child. Not surprisingly, most of this literature has focused on mother's interaction (Fleischman, 1986; Klaus & Kennell, 1979).

As was indicated above, the onset of pre-term labor is an unexpected event. It can occur very early in the pregnancy, with some reports as early as the 18^th week of the pregnancy. There are a variety of treatments for the onset of labor, most involve inhibiting the uterine contractions through medication. Fuchs (1984) indicates six groups of tocolytic agents. Administering these may require hospitalization. Often the mother is kept in the Trendelenburg position, meaning that her head is kept lower than her feet to allow gravity to assist in keeping the fetus in the womb. Home or hospital fetal monitoring may be used to track contractions and baby heart rate. Some mothers are simply told to go home and stay in bed so as not to induce labor through exciting their systems (Fuchs, 1984).

The most important aspect of these treatments, as it relates to this paper, is that these types of interventions often result in the mother being removed from her typical surroundings and limiting the density of her support network. She may be pulled out of work, have to stay in bed, receiving visitors only if they come by, and talk to people by phone and rarely on-line. The woman placed in the hospital may experience this even more severely.

While home-bound mothers have familiar surroundings with an ability to sleep and stay in their own bed, hospitalized mothers are further removed from friends and family. Sometimes they are moved to a hospital hours away with an appropriate NICU, associating most frequently with unfamiliar and often rotating hospital staff, and often having the means of self-initiated outside contact limited because of cost, phones, or Internet access. Although these observations of the early onset of preterm labor are common, as one author (Richardson, 1987) stated, "The extent to which her important relationships during pregnancy facilitate or hinder her efforts to prepare for motherhood and the impact of her experiences of the relationships on the childbearing outcome remain largely unknown" (p. 205).

The birth itself may also not be according to "plan". Depending on the physical condition of the mother, the father may not be able to be in the room when the preemie is delivered. Often the baby is not seen by one or more the parents before being transported to the NICU. It may be hours or even days before one of the parents is able to see the child. Reports from spouse and staff, and perhaps a picture, become the only indication of the reality of the birth (Cohen, 1982; Fleischman, 1986; Graham, 1995). Consequently, the beginnings of the relationship between parent(s) and child may be severely disrupted (Bowlby, 1982; Fleischman, 1986).

While conception, pregnancy, and birth are commonly seen as an event that both mother and child survive (Brimelow, 1997), and one in which there are few complications or problems, it is important to note that nearly 11% of all live births are considered premature (Ventura, Martin, Mathews, & Clarke, 1996). Additionally, half to two-thirds of these preemies require neonatal intensive care for some period of time (Goldson, 1992). If one considers that for each child affected by early birth approximately 2.62 individuals are likewise affected, the actual total number of affected individuals is quite large (U.S. Bureau of the Census, 1993, Table 65). Although there are seemingly large numbers of people going through the experience, it is potentially traumatic because of the suddenness and the difference from the experience that is expected upon finding out about the pregnancy, and in the planning for the eventual arrival (Fleischman, 1986; Miller & Sollie, 1980).

Consequently, there is an abundant literature on the reactions of the parents to premature birth. Some authors have attempted to categorize maternal reactions (Affonso et al., 1992; Pederson, Bento, Chance, Evans, & Fox, 1987; Thompson, Oehler, Catlett, & Johndrow, 1993). A few others have attempted to only look at fathers (Freud, 1995; Long & Smyth, 1998; Martinelli, 1998), while still others have attempted to look at both parents (Affleck, Tennen, & Rowe, 1991; Cohen, 1982; Curran, Brighton, & Murphy, 1997; Graham, 1995; Hughes & McCollum, 1994; Hummel & Eastman, 1991; Hynan, 1991; Klaus & Kennell, 1979). One problem with this literature base; however, is that it often involves studies that use retrospective reporting. Because of ethical and availability concerns, there are both perceived and real difficulties reaching parents while going through time in the NICU, particularly at the beginning. Yet some authors have indicated a decided difference in the reporting of emotionally powerful events depending on the elapsed time from the event (See Schwarz, 1999).

Interestingly, studies carried out in the NICU have reported some similarities when gender is taken into account. In Hughes and McCollum's (1994) study, they found that when asked what was most stressful, the parents responded regarding being separated from their child. Although a closer look at their data also reveals an interesting difference amongst fathers in their responses to familial and work adjustment. In an earlier study (Miles, 1989), the most stressful items reported involved the preemie's appearance and behavior, the alteration of the parental role, staff communication, and the NICU environment. The emotions typically reported include: fear, anxiety, depression, grief, terror, impotence, anger, and hope (Aradine & Ferketich, 1990; Curran et al., 1997; Hynan, 1991). There is a basic agreement that having a child(ren) in a NICU is a stressful time and frightening time and that this stress is not lessened significantly over time.

This experience becomes even more salient when it is understood that for some parents this is not a short term crisis situation. Some parents, particularly those with children born very early or very small, can spend nearly a year with their child in the hospital. For some it may only be a few days. For the purposes of this paper, the suggested model involves those whose stay is longer than a few days, ranging from a week to a year.

A number of the concepts from the social support literature find application in this experience. Looking at a broad overview article like Stroebe and Stroebe's article (1996) "The Social Psychology of Social Support" is a sufficient beginning to help one see the application. They indicate that both the structure, as well as the function, of the interpersonal network are important. Certainly it is worth considering how the structure and function of a social support network are established or changed in the course of a preemie experience simply because of the environmental impact. The eight delineated measures of social network structure also give a place to investigate. Whether one is looking at size of the network, density, content, symmetry/ reciprocity, durability, homogeneity, dispersion, or intensity, there are interesting places to begin confirmation of the proposed model.

Likewise, the benefits of group membership may be another place to investigate the proposed model more closely. The extent to which having social support in the NICU leads to feelings of security, obtaining a social reality view, promoting social regulation, or providing social utility are all potential areas of interest. The ideas of social capital, reciprocity, ratio equity, and attachment theories all become important in understanding the nature of these proposed relationships (Stroebe and Stroebe, 1996). In summary, what is being suggested is that concepts of social support be brought to bear within the environment of the NICU. Because of the intense social involvements both in and out of the NICU environment, it is possible that a more focused look at the parents through these concepts may yield a more comprehensive understanding of the parents' experience. Additionally, these concepts can be used to support and buffer parents from long-term effects of being in a crisis situation with alternating positive and negative affect throughout the experience.

The main reason that social support should be a major focus of any attempts to ameliorate the parents' NICU experience is based on a study that reported that the largest proportion (nearly one-quarter of those involved in the study) of parental coping was accounted for by "seeking social support" (Hughes & McCollum, 1994). Even with this indication of need, there has not yet been work done to see if there is some aspect of the NICU that would account for this need nor the specific nature of social support needed. Most studies are done retrospectively or after discharge. More work needs to be done before and during the NICU experience.

One of the two social support models posited by Cohen and Willis (1985) is that social support protects or buffers "persons from the pathogenic influences of stressful events" (p. 310). After giving a brief review of the concepts of stress (which they note must be closely linked with feelings of helplessness), the authors point to two instances where social support may be of help in buffering the individual(s). First, during the appraisal process, efforts are made to help the individual(s) perhaps not see the situation as stressful as it might potentially be. The second instance is after the situation has been appraised as stressful. At this time the focus is on either reappraisal or reducing or eliminating the stress reaction. If this model were applied in the context of premature birth and NICU stay, we have the potential for numerous contacts and numerous interventions in the lives of the parents (Cohen & Wills, 1985). This is primarily because the preemie parent experience is fraught with new crisis and stressors that invite pre-appraisal and re-appraisal. More will be said about this later.

Social support has been defined as the resources one obtains from one's interpersonal ties (Cohen & Hoberman, 1983; Davis, Logsdon, & Birkmer, 1996). There has been some discussion as to whether it is important that the support merely be available or actually received to be helpful. In other words, it may be just as helpful to perceive that help is available as it is to actually draw upon the assistance. Parents of NICU admitted infants don't often ask for help from medical personnel because they a) don't know what questions to ask, b) don't think that the staff can help, c) don't believe that it's the staff's job to take care of the parent, d) don't want to draw the staff away from caring about their child, or e) some combination of the preceding four options. It is proposed that both knowledge of accessibility as well as actually receiving needed support are important for the parents of NICU preemies. Social support has been further sub-classified into four main areas: Material, emotional, informational, and comparison (Cronenwett, 1985; House, 1981).

Material support (sometimes entitled instrumental support) has been defined as access to or receipt of material aid, labor, or some other physical aid. This may be important to parents of preemies because of the financial strain on the family, as well as the time that is lost attending to other previously important items (i.e., help with insurance paperwork, mowing the lawn, where to stay when at the hospital, clothes for preemies, transportation to the unit, time lost from work etc.) (Affleck et al., 1991).

Emotional support has been defined as access to or receipt of trust, affect, or some other intimate connection and understanding. This may be important to parents of preemies because of the emotional taxing that is experienced through repeated brushes with death, surgeries, loss of control, and the other feelings delineated in the parental reaction literature. Most parents indicate that the emotional costs are the most taxing and difficult. Often friends and family withdraw, further weakening the social support structure, while those that remain can often relate unhelpful and undermining types of comments (Affleck et al., 1991; Chesler & Barbarin, 1984; Revenson, Wollman, & Felton, 1983).

Informational support is defined as access to or receipt of advice, suggestions, and other information about the situation. This would involve information about their child's condition, prognosis, and treatment plan. It could also involve information about the equipment being used to support the child or measure his vital signs. It would also include information about what they as parents can expect personally to experience emotionally, cognitively, and physically. In this area specifically, because of the differences in parents (individually and collectively) in their desires to know more fully information about their child, it is important to emphasize that this support can be given both in access to and in receipt of the information. Some parents don't receive this support because they don't know that it is available; others don't receive it because it isn't available. Many parents in retrospect describe this as an important part that was missing.

Comparison support (sometimes entitled validational or appraisal support) is defined as access to or receipt of affirmation and/or social comparison. For the parents of the preemie, it can be helpful to know how children in similar circumstances have done previously. Additionally, it is important for parents to understand how similar their reactions are to others. Parents are probably very aware that this experience does not compare well to other full-term pregnancies. They may not understand what types of comparisons can be made to other children and other parents' experiences.

With an introductory background to the course of premature child's delivery and NICU stay, as well as a brief understanding of social support, it may be helpful to look at a model of how this may be put together. The decision flowchart for premature birth is first presented without the times and types of intervening social support. (See Figure 1). Following this broader perspective, critical times are selected for closer review and commentary.

In this model we have the parents moving from the initial stages of pre-term labor, with its associated causes, to decisions (indicated by diamond shapes) about whether labor can be stopped and whether the mother can or should hospitalized. The mother may be hospitalized or sent home and may periodically move back and forth between hospital visits/stays and home. This may be for a periods of hours to months. Inevitably, the child will be born, but there are still decisions to be made.

The first decision regards the child's viability. This is typically determined by the physician. It is rare for a child to survive before 21 weeks gestational age (GA) because of inadequate lung and other intern organ development. Consequently, few physicians can save a baby that early and it is likely that any delivery, and subsequent death, preceding the 22^nd week of gestation would be seen as a miscarriage or stillbirth. For those fetuses born after 22 weeks GA, decisions are then made about the ethical correctness, legal constraints, medical viability, and parental wishes regarding resuscitation. Dr. Guan Koh's table of gestation vs. morbidity for the earliest of preemies (23-28 weeks GA) is illustrative:

(Koh, Harrison, & Morley, 1998)

The legal stipulations concerning resuscitation will vary from state to state, but are typically based on a 1983 presidential commission to study the issues from a variety of standpoints (Research, 1983; Zaner & Bliton, 1991). Certainly another part of this important decision is whether the child can or should be intubated.

If the child is resuscitated and/or viable, admission to the NICU is the next step. While there are a number of events that occur in this area, more time will be taken to discuss these later in the paper. Suffice it to say at this point that it is a turbulent time with little predictability and length of stay is difficult to determine. Typically, the desired outcome is that the preemie survives and is taken home by the parents. There remains a need for social support after discharge and there has been at least one study exploring this part of the experience (Davis et al., 1996). Should the preemie die, either after attempts to resuscitate fail or during the NICU stay, it is assumed that the parents will need other types of support regarding the grief process (Feeley & Gottlieb, 1988-1989; Klass & Marwit, 1988-1989; Marshall & Cape, 1982; Rosen, 1988-1989; Smith & Borgers, 1988-1989; Theut, Zaslow, Rabinovich, Bartko, & Morihisa, 1990; Thomas, 1996; Videka-Sherman, 1982; Videka-Sherman & Lieberman, 1985). These processes are outside the realm of this paper.

As indicated above, this paper proposes to offer suggestions of specific social support interventions in relation to the varied course of the parents from pre-term birth until discharge or death. To facilitate this, parts of the model will be explored in connected segments, with suggestions of which of the specific four types of social support and examples of each are included in this segment.

It is proposed that to support parents at this time informational and perhaps emotional support will be most helpful. Possibilities include information regarding the warning signs of pre-term labor, earlier beginnings of birth classes, and a more realistic portrayal in the popular literature. As an example, in the popular book, "What to Expect When You're Expecting", premature labor is discussed in the chapter for the seventh month. For those with extremely early preemies, their child is born in the fifth or sixth month. What is written about pre-term labor, is 10 pages long, and does not include any information about NICUs (Eisenberg, Murkoff, & Hathaway, 1991). It may be helpful beyond the informational support to provide emotional support in the way others react to vigilant monitoring of lower abdominal pain or discharge by expectant mothers rather than the more typical response of perceiving this behavior as dysfunctional or problematic.

Decisions in this phase effect the social network structure. While attending to the four previously mentioned sub-areas, attention must also be given to the structure itself. This is particularly true, because the network structure developed early in onset of these difficulties can be the network available (perceived or accessed) after delivery. Waiting until after the delivery stage wastes time and the opportunity which can lead to the creation of a more difficult situation for buffering stressors. It may also allow parents to be more focused on accessing some control of the situation as well as beginning the establishment of new trusting relationships and broadening the social support network.

It is proposed that emotional support will be helpful here, whether from the staff as new (and perhaps necessary but not sufficient) members of the social support network, from existing network members, or from new outside members (i.e., parent support groups, hospital volunteers, Internet access, etc.). Informational support can be helpful in preparing for the varities of the experience and for the upcoming decisions regarding treatment and what to expect at birth. Comparison support may also be helpful. Some sense of whether the waiting and delaying of labor is psychologically "survivable", and how it has worked for others may be particularly helpful at this time.

Delivery (Immediately pre- and post-)

While it would be ridiculous to expect informational support at this time to involve reading a book, or having a group meeting for others input, it is still possible to convey to the parents what delivery will be like. Parents may need to know if the delivery will be quick, who will be in the delivery room, what will occur after delivery, whether the child will be able to be seen or held, and what to expect before the child can be seen and/or held. Certainly emotional and validational support during and after delivery can give some sense to the parents that their feelings are normal, understood, and appropriate to express.

As parents are faced with decisions of resuscitation and immediate care, informational support and emotional support once again become key. It is no easy thing to be part of the life and death decisions of a child you have barely begun to know. Dr. Koh's table from earlier in the paper may again need to be part of the discussion with parents. Emotional and validational support may include understanding the possibility for both relief and fear about the new birth, acculturation to new and sudden parenthood, and acceptance of the loss of the perfect pregnancy, the perfect child, and of what was expected to happen.

This speaks to an important point about the types of support, especially informational that may be given or available. The support needs to be repeated. Repetition is vital because a) both parents may not be present when information is give; b) because mothers may be medicated during the discussion; and c) because in the face of a traumatic situation parents may have difficult times remembering all the information. Staff and parents need to accept that a request for information is neither an indication of cognitive difficulties, emotional deficits, or questioning of care, but part of the decision-making process of the parents. One practitioner has suggested that meetings with parents be tape recorded and the tape given to the parents so that this type of repeated informational support can be given at the parents' discretion. (Koh & Jarvis, 1998) Similarly, the emotions associated with wondering if, or becoming certain that, your child will die or be subjected to painful or discomforting procedures, may need to be expressed over and over. Parents may need validational support to do so.

This area, because of the lack of consistent, predictable course has, for the purpose of the paper, been conceptualized into defining critical moments and include: Introduction to the NICU, First Seeing the Child, Meeting the Staff, Attempts at Parenting, Finances, Health Crises, Functioning with the Other (if present) Parent, and Death. This list is not meant to necessarily be chronological. In fact some of these events occur over and over. These are suggested as the more common experiences in the NICU, but because each moment varies in its presentation, those involved, and the types of support given, typical themes and interventions will be discussed.

Types of material support could include things like: free telephone calls for parents to the unit (i.e., a toll free number), reduced parking costs at the hospital, reduced or free meal tickets while at the hospital, Ronald McDonald House access, Social Security Insurance information since most children born under a particular weight automatically qualify, rocking chairs to sit in on the unit, and rooms for conferencing with physicians or to deal with emotions privately and confidentially, as well as privacy during nursing or expression of milk.

Types of emotional support could include: encouraging inter-parent communication, parent groups, access to an on-site counselor, a chapel, friends and family, sibling access to the unit and child, expressions of care and concern, appropriate remembrances of anniversary dates and holidays (i.e., Mother's day, Father's day, Christmas, etc.), major milestones (weight, removal of technological assistance, etc.), and even Internet list-serves can provide increase access and receipt of emotional social support.

Types of informational support include Internet sites, books, involvement in treatment planning, teaching the parent how to care for their child, helping the parent to understand the "messages" the preemie gives regarding its situation, developmental care, unconditional access to preemies' records, beepers for parents who may through work and other circumstances be hard to reach by phone. Having a primary nurse or staff that takes care of the child, frequent meetings with the parents, and hospital initiated contact when child's situation has changed dramatically, are also examples of potential informational support.

Validational support is also needed. As parents begin to interact with their child, it can be helpful for staff to encourage and validate the appropriate handling, care, and affection towards their child. Acknowledging and encouraging frequent visits, calls, and questions can be supportive. Parents may find comparison support in on-line list-serves as they communicate with parents who have been through similar situations. Support groups on- and off-site can provide not only the emotional support listed above, but validational support as well. Doctors' comments are liable to have great weight with parents, and can serve to effectively promote good care and comfortableness around the child; conversely, negative or condescending attitudes can increase anxiety and trepidation. Bulletin boards with "graduates" from the NICU and follow-up reunions can also serve to support parents.

Should the preemie appear to be dying, these aforementioned types of support continue to have impact on the parents. Much of what has already been stated about supporting the parents requires only that the interaction be placed in an anticipatory or actual grieving context. There is a large literature base for helping parents deal with the grieving process. Although the grief model concerning the loss of a child may not be applicable to this model, an understanding of it by staff may be helpful to the overall well-being of the parents should the need arise.

As indicated earlier, there are studies available regarding the types of support parents request surrounding discharge issues (Affleck, Tennen, Rowe, Roscher, & Walker, 1989; Davis et al., 1996; Logsdon & McBride, 1989; Logsdon & McBride, 1991; Logsdon, McBride, & Birkimer, 1994). Certainly, material, comparison, informational, and emotional support can be important here. Sometimes helping the parents to adjust by having them "room-in" with their child for a few days can be helpful. It allows parents to attempt taking care of their child, while having immediate and proximal assistance in the medical staff. A willingness to maintain some relationship with the parents by the staff after discharge may also be helpful.

Four main hypotheses exist in the model: first, that the application of social support in the experiences of parents of preemies will lower stress levels and buffer the parents from long-term psychological difficulties (Affleck et al., 1991; Revenson et al., 1983); second, that specific types of social support will be necessary at different times and for different reasons throughout the experience; third, the needed extent and amount of social support will be positively correlated with the preemie's problems (this may also be true of having more than one preemie, in the case of multiple birth); and fourth, that there will be differences in the social support needs of parents based on gender.

One needed difference for this model and its measurement from previous models is the requirement for measurement in vivo. Retrospective studies have guided this and other attempts to understand parents reactions, but until we can accurately portray what is going on while the parents experience it and then compare this to retrospective or discharge measures, we will be missing vital information. As indicated earlier, there are differences in other affect-laden experiences between concurrent and retrospective reporting (Schwarz, 1999). Consequently we have no accurate measures of changes that may take place in the parents over the course of the NICU experience. Additionally, there are no studies in the literature that specifically target minorities or single mothers and their need for support in the NICU. This is a tragic absence in the literature.

Areas that need measurement are numerous. Among those seeming most apparent include: measuring support expectation, support received, support perception, and coping style as well. Coping style has been implicated as having an impact and that obtaining social support is related to one's problem-solving approach (Dunkel-Schetter, Folkman, & Lazarus, 1987). Whether one is looking at size of the network, density, content, symmetry/ reciprocity, durability, homogeneity, dispersion, or intensity, a correlational analysis between this and parental stress should be negatively correlated. There are a variety of measures of parental stress, parenting self-efficacy, as well as measures of social support, both perceived and accessed. These could be linked together to ascertain the potential effectiveness of the interventions. It is predicted that the use of social support for parents of premature infants will increase parenting self-efficacy, diminish stress, and help parents to maintain greater well-being. A closer investigation of what is not helpful during this experience has yet to be done as well.

Most of the literature has been quantitative in nature. Two recent measures could be applied easily to this population (Brandt & Weinert, 1981; Norbeck, Lindsey, & Carrieri, 1981). Qualitative measures may serve to be more helpful in anticipating problem areas along with their impact and meaning. Grounded theory (Glaser, 1992; Glaser & Strauss, 1967) has been suggested as an appropriate model for understanding the experience of phenomena but has yet to be applied to this population, although it has been used in other pediatric settings (Beck, 1996). A qualitative analysis of parental reactions would perhaps give a better understanding to the overall experience, and it is quite possible that more open-ended questioning may allow for gender differences and for an understanding of the reactions and changes over the time in the NICU.

It has been suggested in this paper that the model of social support can be used to alleviate and buffer parents from the stress and psychological implications of a child born and admitted to a NICU. A decision flowchart of the preemie experience was illustrated. A model to that effect along with an explanation of the types of support, with examples, needed at critical defining moments of the experience has also been presented. Hypotheses and measurement suggestions have also been made, with particular emphasis on unused qualitative measures.

It is unlikely that attempts to provide social support to parents will completely eliminate the difficulties associated with pre-term birth. It does behoove us, however, to reach out to the thousands of parents and families impacted by these events every year. Taking a more pro-active approach to the difficulties of "preemie-hood", in the long run, is liable to be less costly in both dollar and psychological terms. It is also a model that seeks to build on parents' already existing strengths and views them in a more positive and strong way. It is a model that attempts to help parents do their job---parenting, and allow them to see the child as theirs from the beginning, not when the physicians or others tell them it's theirs. At the very least, it is a more humane way of treating parents and children. Effective use of these treatment and intervention options may have ultimate impact in the families of the preemies and consequently in the preemie itself.

References

Affleck, G., Tennen, H., & Rowe, J. (1991). Infants in crisis: How parents cope with newborn intensive care and its aftermath. New York: Springer-Verlag.

Affleck, G., Tennen, H., Rowe, J., Roscher, B., & Walker, L. (1989). Effects of formal support on other's adaptation to the hospital-to-home transition of high-risk infants: The benefits and costs of helping. Child Development, 60, 488-501.

Affonso, D. D., Hurst, I., Mayberry, L. J., Haller, L., Yost, K., & Lynch, M. E. (1992). Stressors reported by mothers of hospitalized premature infants. Neonatal Network, 11(6), 63-70.

Aradine, C. R., & Ferketich, S. (1990). The psychological impact of premature birth on mothers and fathers. Journal of Reproductive and Infant Psychology, 8, 75-86.

Beck, C. T. (1996). Grounded theory: Overview and application in pediatric nursing. Issues in Comprehensive Pediatric Nursing, 19, 1-15.

Belsky, J. (1984). The determinants of parenting: a process model. Child Development, 55, 83-96.

Bowlby, J. (1982). Attachment and loss: Retrospect and Prospect. American Journal of Orthopsychiatry, 52(4), 664-678.

Brandt, P. A., & Weinert, C. (1981). The PRQ---A social support measure. Nursing Research, 30(5), 277-280.

Brimelow, P. (1997, December 29, 1997). The Lost Children. Forbes, 47.

Chesler, M., & Barbarin, O. (1984). Difficulties in providing help in a crisis: Relationships between parents of children with cancer and their friends. Journal of Social Issues, 40, 113-134.

Cohen, M. R. (1982). Parent's Reactions to Neonatal Care. In R. E. Marshall, C. Kasman, & L. S. Cape (Eds.), Coping and Caring for Sick Newborns (pp. 15-46). Philadelphia: W. B. Saunders Co.

Cohen, S., & Hoberman, H. M. (1983). Positive events and social supports as buffers of life change stress. Journal of Applied Social Psychology, 13(2), 99-125.

Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310-357.

Cronenwett, L. R. (1985). Network structure, social support and psychological outcomes of pregnancy. Nursing Research, 34(2), 93-99.

Curran, A., Brighton, J., & Murphy, V. (1997). Psychoemotional care of parents of children in a Neonatal Intensive Care Unit: Results of a questionnaire. Journal of Neonatal Nursing, 3(1), 25-29.

Davis, D. W., Logsdon, M. C., & Birkmer, J. C. (1996). Types of support expected and received by mothers after their infants' discharge from the NICU. Issues in Comprehensive Pediatric Nursing, 19, 263-273.

Dunkel-Schetter, C., Folkman, S., & Lazarus, R. (1987). Correlates of social support receipt. Journal of Personality and Social Psychology, 53, 71-80.

Eisenberg, A., Murkoff, H. E., & Hathaway, S. E. (1991). What to Expect When You're Expecting. (2nd Edition ed.). New York: Workman Publishing Co.

Feeley, N., & Gottlieb, L. N. (1988-1989). Parents' coping and communication following their infant's death. Omega, 19(1), 51-67.

Fleischman, A. R. (1986). The immediate impact of the birth of a low birth weight infant on the family. Zero to Three, 6(4), 1-5.

Freud, W. E. (1995). Premature Fathers: Lone Wolves? In J. L. Shapiro, M. J. Diamond, & M. Greenberg (Eds.), Becoming a father: Contemporary social, developmental, and clinical perspectives (pp. 234-242). New York: Springer Publishing Co.

Fuchs, F. (1984). Principles of Tocolysis: An Overview. In F. Fuchs & P. G. Stubblefield (Eds.), Preterm Birth: Causes, Prevention, and Management . New York: Macmillan Publishing Co.

Glaser, B. (1992). Basics of grounded theory analysis. Mill Valley, CA: Sociology Press.

Glaser, B., & Strauss, A. (1967). The discovery of grounded theory. Strategies for qualitative research. Chicago: Aldine.

Goldson, E. (1992). The neonatal intensive care unit: Premature infants and parents. Infants and Young Children, 4(3), 31-42.

Graham, S. (1995). Psychological needs of families with babies in the neonatal unit: The role of the neonatal nurse. Journal of Neonatal Nursing, 1(4), 15-18.

Hill, R. (1965). Generic Features of families under stress. In H. Prad (Ed.), Crisis Intervention . New York: Family Service Association of America.

House, J. W. (1981). Work stress and social support. Reading, MA: Addison-Wesley.

Hughes, M., & McCollum, J. (1994). Neonatal intensive care: Mothers' and fathers' perceptions of what is stressful. Journal of Early Intervention, 18(3), 258-268.

Hummel, P. A., & Eastman, D. L. (1991). Do parents of preterm infants suffer chronic sorrow? Neonatal Network, 10(4), 59-65.

Hynan, M. T. (1991). The emotional reactions of parents to their premature baby. Pre- and Peri-Natal Psychology Journal, 6(1), 85-95.

Klass, D., & Marwit, S. J. (1988-1989). Toward a model of parental grief. Omega, 19(1), 31-50.

Klaus, M., & Kennell, J. (1979). Care of the Parents. In M. H. Klaus (Ed.), Care of the High-Risk Neonate (pp. 146-172). Philadelphia: W.B.Saunders.

Koh, T., Harrison, H., & Morley, C. J. (1998). Gestation vs. morbidity table for parents of extremely premature infants .

Koh, T., & Jarvis, C. (1998). Promoting effective communication in neonatal intensive care units by audiotaping doctor-parent conversations. International Journal of Clinical Practice, 52(1), 27-29.

LeMasters, E. (1957). Parenthood as crisis. Journal of Marriage and Family Living, 19, 352-355.

Logsdon, M. C., & McBride, A. B. (1989). Help after childbirth....Do women get what they need? Kentucky Nurse, 37(7), 14-15.

Logsdon, M. C., & McBride, A. B. (1991). Further data on the postpartum support questionnaire. Kentucky Nurse, 39(6), 13.

Logsdon, M. C., McBride, A. B., & Birkimer, J. C. (1994). Social support and postpartum depression. Research in Nursing and Health, 17(1), 449-457.

Long, A., & Smyth, A. (1998). In the palm of my hand: An exploration of a man's perception of becoming a father to a premature infant and the nursing care received in a NICU. Journal of Neonatal Nursing, 4(1), 13-17.

Marshall, R. E., & Cape, L. S. (1982). Coping With Neonatal Death. In R. E. Marshall, C. Kasman, & L. S. Cape (Eds.), Coping and Caring for Sick Newborns (pp. 31-46). Philadelphia: W.B. Saunders.

Martinelli, E. A., Jr. (1998). All to whom my heart responds. Early Edition, 4, 11-12.

Miles, M. S. (1989). Parents of critically ill premature infants: Sources of stress. Critical Care Nursing Quarterly, 12(3), 69-74.

Miller, B. X., & Sollie, D. L. (1980). Normal stresses during the transition to parenthood. Family Relations, 29, 459-465.

Norbeck, J. S., Lindsey, A. M., & Carrieri, V. L. (1981). The development of an instrument to measure social support. Nursing Research, 30(5), 264-269.

Osofsky, H. (1982). Expectant and new fatherhood as a developmental crisis. Bulletin of the Meninger Clinic, 46, 209-230.

Pederson, D. R., Bento, S., Chance, G. W., Evans, B., & Fox, A. M. (1987). Maternal emotional responses to preterm birth. American Journal of Orthopsychiatry, 57(1), 15-21.

Research, P. s. C. f. t. S. o. E. P. i. M. a. B. a. B. (1983). Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions.

Revenson, T., Wollman, C., & Felton, B. (1983). Social supports as stress buffers for adult cancer patients. Psychomatic Medicine, 45, 321-331.

Rosen, E. J. (1988-1989). Family therapy in cases of interminable grief for the loss of a child. Omega, 19(3), 187-202.

Schwarz, N. (1999). Self-Reports: How the questions shape the answers. American Psychologist, 54(2), 93-105.

Smith, A. C., & Borgers, S. B. (1988-1989). Parental grief response to perinatal death. Omega, 19(3), 203-214.

Theut, S. K., Zaslow, M. J., Rabinovich, B. A., Bartko, J. J., & Morihisa, J. M. (1990). Resolution of parental bereavement after a perinatal loss. Journal of the American Academy of Child and Adolescent Psychiatry, 29(4), 521-525.

Thomas, J. (1996). Step by step guide: When a baby dies. Journal of Neonatal Nursing, 2(4).

Thompson, R. J., Jr., Oehler, J. M., Catlett, A. T., & Johndrow, D. A. (1993). Maternal psychological adjustment to the birth of an infant weighing 1,500 grams or less. Infant Behavior and Development, 16, 471-485.

Ventura, S. J., Martin, J. A., Mathews, T. J., & Clarke, S. C. (1996). Advance report of final natality statistics, 1994. Monthly Vital Statistics Report, 44(11(S)), 88.

Videka-Sherman, L. (1982). Coping with the death of a child: A study over time. American Journal of Orthopsychiatry, 52(4), 688-698.

Videka-Sherman, L., & Lieberman, M. (1985). The effects of self-help and psychotherapy intervention on child loss: The limits of recovery. American Journal of Orthopsychiatry, 55(1), 70-82.

Zaner, R. M., & Bliton, M. J. (1991). Decisions in the NICU: The moral authority of parents. Children's Health Care, 20(1), 19-25.

Fig. 1 Model of NICU Course

Figure 1. (Cont'd)

Figure 2. Description of Critical Defining Moments

Check out the Virtual Conference Home Page
Return to the Preemie-L Home Page