Creating Paths: Living With a Very-Low-Birth-Weight Infant

pc;.l\' CLINICAL STUDIES

Creating Paths: Living With a Very-Low-BirthWeight Infant Elias Vasquez, NNP, PhD

Objective To describe parents' method of adaptation to the problems of caring for a very-low-birth-weight(VLBW) infant at home. Design: Exploratory, involving three interview sessions, 1 month, 3 months, and 5 months after hospital discharge of a VLBW infant. Setting: A newborn intensive-care unit in a tertiary-care center. Participants: Fourteen parents of VLBW (<1,500 g) infants after hospital discharge. Results: A basic social process, Creating Paths, was identified. It is the continuous process experienced by parents living with a VLBW infant the first 5 months after hospital discharge. The process consists of three stages: gathering, emerging, and affirming. Conclusions: This grounded theory systematically tracks and describes the adaptation process of parents with VLBW infants during the first 5 months of living at home. The theory may be used to anticipate concerns and provide guidance and support to parents and their infants.

Accepted: June 1994

n the early 1970s, only one half of all very-low-birthweight (VLBW) infants weighing between 1,000 and 1,500 g survived. During the past 2 decades, there has been spectacular progress in the nursing and medical care of premature infants. The mortality rate for VLBW infants has dropped >85% (Wariyar, Richmond, & Hey, 1989). As a result, the increasing survival rate of VLBW infants has led to an expanding number of parents who must cope with the special and often demanding needs of their infants after discharge from the hospital. Moreover, this situation places these infants at increased risk for a variety of psychosocial sequelae, including child abuse, neglect, and failure to thrive (Behrman, 1990; Perrault, Coates, Collinge, Pless, & Outerbridge, 1986). The purpose of this study was to explore the adaptation pro-

September 1995

cess parents experience after hospital discharge of their VLBW infant.

Conceptual Orientation Roy's adaptation model (1980) served as a conceptual orientation for this study. Roy proposed that adaptation is a process of ongoing interaction individuals experience with their environment to establish equilibrium. For example, the daily, constant interaction between parents and their VLBW infant changes as the infant grows and they adapt to each other.

Review of tbe Literature This literature review presents three perspectives relevant to the purpose of this study. The study assumes that to understand the adaptation process and the factors influencing it, one must observe the interaction among premature infant development, the experience of parenting these infants, and follow-up care. Premature Infant Development The incidence and severity of developmental sequelae in premature infants remain controversial. Methodologic problems in research focusing on premature infants relate in part to the heterogeneity of this population. Degree of growth retardation, gestation, socioeconomic status, and age at assessment are key etiologic factors (Easterbrooks, Harmon, & Macey, 1987). Studies in the 1970s focused on the premature infant's biologic status and medical complications to predict developmental outcome (Pape, Buncic, Ashby, & Fitzhardinge, 1978). More recent studies have shown that a biopsychosocial perspective incorporating both biologic and social risk should be used to evaluate the longterm sequelae of neonatal complications (Leonard et al., 1990; McCain, 1990). Further, the literature indicated that the ways parents perceive their VLBW infant, as well as caregiver-infant interaction, are essential to the devel-

J O G N N 619

CLlNlCAL S T U D l E S

opmental outcome of the VLBW infant (Minde, Perrotta, bz Hellmann, 1988). Parenting the Premature Infant Studies have shown that parents experience the premature birth of their infant as an emotional event (Caplan, Mason, bz Kaplan, 1965; Pederson, Bento, Chance, Evans, bz Fox, 1987). Feelings of shock at delivery; fear of the infant’s death (Trout, 1983); guilt; and grief for not having a healthy, full-term infant are common among these parents (Glassanos, 1980). The birth of a premature infant represents a crisis for most parents and may adversely affect the development of the parent-infant relationship (Ladden bz Damato, 1992). Follow-up Care The discharge of a VLBW infant from the intensive-care nursery does not always mean the infant’s problems are resolved. Studies have shown that poor growth, developmental delay, problems with motor coordination, and parenting problems may accompany the VLBW infant home (Brooten et al., 1988; Szatmari, Saigal, Rosenbaum, Campbell, bz King, 1990).

Methods Design The dearth of literature on the adaptation process of parents after hospital discharge led to the selection of grounded theory methodology (Glaser & Strauss, 1967). Grounded theory is an inductive method in which data are grounded in fact and theory is generated from data. The aim of ground,ed theory is to generate theories about social and psychologic phenomena. Sample Fourteen parents whose VLBW (<1,500 g) infants had been discharged from the hospital were informants for this study. Additional criteria included that the VLBW infant not require complex home care (i.e., be dependent on oxygen, ventilator, or both) and that the informants participate voluntarily and be willing to take part in three interviews. The sample included 10 couples and 4 single mothers. The parental unit served as a unit of analysis. The informants’ mean age was 33 years (range, 21-60 years). Data Collection Anonymity and confidentiality of the informants were ensured, and written consent was obtained from them. To explore the adaptation process, the informants participated in three interview sessions held at 1 month, 3 months, and 5 months after hospital discharge of the VLBW infant. This schedule was based on the literature that suggested intervention might be required at these time periods, when developmental sequelae may surface (Minde et al., 1988; Pena, Teberg, & Hoppenbrouwers, 1987). Initial data were gathered by using a formal interview

620 J O G N N

guide that contained a set of brief, general questions. Questions included the following: How did you manage at home after the baby was discharged from the hospital? What were your thoughts? Your feelings? Further questions were modified according to the emerging grounded theory. For example, parents were asked how they coped with the feeling of isolation after the hospital discharge of their infant and what factors contributed to their isolation (e.g.,the VLBW infant’s size and weight). The length of each interview varied, ranging from 1 to 2 hours. Data Analysis Tapes were transcribed verbatim. Data analysis involved examining the transcribed interviews line by line to identify the adaptation process as it seemed to emerge from the data. Data were coded, compared with other data, and assigned to categories (coded data that seemed to cluster together). Data were analyzed by the constant comparison method (Chenitz bz Swanson, 1986; Strauss, 1987). This method is designed to aid in generating an integrated and consistent theory. Constant comparison allows for the continued integration of accumulated knowledge. Through concurrent data collection and data analysis, patterns within the data emerged, and focused questioning guided further collection of data. Categories were constantly modified as successive data demanded. Trustwortbiness Generally, qualitative researchers avoid using the terms “reliability” and “validity.” However, they deal with these issues by using the term “establishing trustworthiness.” Trustworthiness encompasses confidence in the truth of the findings, the degree to which the findings are applicable in other contexts, the consistency of the findings, and the degree to which the findings are determined by the subjects (Lincoln & Guba, 1985). To judge this study for its degree of trustworthiness, three areas were assessed: truth value, dependability, and confirmability. The truth value of this study was established by sharing with the study participants the developing grounded theory, with its concepts and definitions, to increase clarity and relevance. For this study, peer debriefing was used to monitor dependability. Peer debriefing exposes the process of inquiry to a peer (neonatal nurse practitioner-neonatal nurse) for the purpose of establishing the dependability of the inquiry. All raw data, data analysis products, and synthesis products were saved and were available for auditing, a method of evaluating confirmability. (Lincoln & Guba, 1985).

Results The grounded theory Creating Paths (see Figure 1) evolved from this study. Creating Paths tracks and describes the basic social process of parents as they adapt to living with their VLBW infant during the infant’s first 5 months after hospital discharge. This process consists of three stages: gathering, emerging, and affirming.

Volume 24, Number 7

Creating Paths

Stage 2

Stage 1

I

Gathering -b

I Sustenance

Protection

Stage 3

Emerging -b

Surveillance

Exchange

Affirming

Debut

Real Time

Figure I . Creuting Pufhs.

Stage 1: Gathering Gathering refers to the collection of special resources required to cope with a VLBW infant. The need to gather these resources often becomes apparent only after the infant leaves the hospital. Data suggest that this may be the stage when actual, real-life parenting begins. Subcategory: Sustenance. Parents seek ways to sustain the life of the VLBW infant by gathering and collecting information. As their infant nears discharge, they actively solicit information and help. For example, parents initially ask many questions about their infant’s care and personality. They usually ask those who are most likely to have the answers-the nurses and medical staff. An “acquaintance phase” takes place in the first few days after the infant is discharged from the hospital. Parents use trial and error when caring for their infant, with a simple, critical goal of keeping the infant alive.

Being so terrified. . .I was afraid to put her down in her crib. I kept thinking. . . she could die. That only lasted for about 3 weeks.”

66

Parents often maintain detailed journals about initial caregiving techniques and routines for their “special baby.” They may try various feeding, holding, and interactive techniques to learn what elicits the best responses from the infant. Thus, experience is the best teacher in showing parents what works.

September 1995

We were anxious most of the time for the first few

days after her discharge. Our anxiety increased during her feedings . . . we didn’t want to hurt her by doing something wrong. Subcategory: Protection. In this stage, parents provide the VLBW infant with nonstop protection. They defend and actually guard the infant from potential hazards, such as exposure to germs from strangers, friends, and even close family members. Parents also shield their VLBW infant from outsider comments. For example, parents initially avoid unintentional insults from friends and family. These insults include comments about the infant’s small size and fragility. In addition to psychologic shields, parents develop strategies and defense mechanisms to protect the VLBW infant from possible physical harm. Parents do this byisolating themselves and their infant. By becoming reclusive, they gain and maintain tighter control over the environment. This process may continue until the infant reaches predetermined goals set by the caregivers and parents. For example, weight gain is often a key target. Once the infant attains a certain weight, parents may again invite people to their home. When people come over . . . mostly relatives . . . I did tell them that they couldn’t touch the baby. I felt so bad, and a bit awkward. Stage 2: Emerging Throughout stage 2 , new roles emerge and differentiate. The infant becomes expressive and provides parents with cues about what she or he likes and dislikes. Parents are buoyed by the discovery that their infant actually has a distinct personality. This prompts parents to emerge and

J O G N N

621

CLINICAL S T U D I E S

reestablish relationships with family and friends they had neglected during the early phases of their infant’s homecoming. Subcategory: Surveillance. The surveillance subcategory starts with a gradual lowering of the protection. Although parents still closely monitor their infant and the surroundings, they cautiously introduce their infant to family and friends. The need to resurface grows, both for parents and for the infant. Family and friends now may visit under protective conditions. By now, the emerging parents realize the extent of the isolation they have experienced. We didn’t go to restaurants until 3 months after discharge. . . . We didn’t take him out much those first couple of months. And we still don’t g o out much. New situations may arise as parents and their infant gradually emerge from isolation. For example, strangers may want to learn about and touch the previously untouchable infant. In confronting the public, parents often d o not know how to respond to the personal questions of strangers. Subcategory: Excbange. The exchange subcategory reviews the relationship between parents and their VLBW infant. Initially, there is a one-way relationship between parents and infant, with the parents providing physical care and the infant providing little or n o feedback. A twoway relationship is difficult to establish because premature infants usually have delayed interaction skills. However, as the VLBW infant matures, the parentinfant relationship becomes more apparent and is experienced more frequently. A spiral effect occurs during this stage, and parents finally receive reinforcement for their unceasing efforts to nurture their infant. Parents acknowledge the changes in their infant’s behavior. Once he starts smiling and listening to your voice, you’re getting something back. . . . It’s been really hard. As parents nurture their infant, the level of care changes. For example, parents now can understand their infant’s behavior because they recognize her or his various cries caused by hunger, a wet diaper, or the need for attention. This change relieves parents, who may have feared that their infant was not responding to parenting efforts.

sick or was just overprotected. Family and friends, who now involve themselves, see only the positive results. They cannot know the initially challenging and horrifying experiences or sacrifices the parents have made to sustain the VLBW infant’s life. Having made significant progress with their VLBW infant, parents now seek positive feedback from others to help validate their nurturing efforts. Subcategory: Debut. Once parents reach the affirming stage, they feel more comfortable taking their VLBW infant out in public. They feel the excitement and pride of having a new and emerging healthy infant. Physically, the infant looks healthier. The infant is growing and is healthy enough to deal with a multitude of environmental hazards. This debut phase is critical for parents because it allows family and friends belatedly to celebrate the birth. However, some encounters may be unnerving. Many people assume that all premature infants are fragile, and parents do not like to hear this. People initially may be apprehensive and afraid of the infant. Therefore, despite their joy of having a newborn infant whom they finally are able to share, parents may be annoyed by some remarks people make. They’re afraid of him, some people are afraid to touch him . . . he’s so small. I’m talking about relatives, the people that I expect to love him. They love him . . . but don’t show it. They haven’t celebrated his birth yet. . . . It’s been 7 months. Parents eventually are less angered by casual or insensitive remarks and questions about their infant. They n o longer make apologies for their premature infant’s appearance. They n o longer explain why facial features may be different, or why there are scars from intravenous needles on their infant’s body. Her head shape is different. Most kids have squat heads with big cheeks. The preemie head is so elongated. And then there are scars on her feet . . . on both feet. There are IV sticks, little scars on her scalp. I understand and appreciate the fact that it was a way to keep her alive. But it’s a little disturbing . . . a constant reminder.

a family. Parents not only emerge, they also affirm and reaffirm their family unit. Most important, they introduce their VLBW infant to the outside world. Parents doubted that their families and friends could ever understand the extent of their initial traumatic experiences. For example, friends will comment about how well the infant looks and ask if the infant really had been

Subcategory: Real Time. Real time refers to the measure of time parents use to gauge and understand their infant’s development, which includes health, weight, size, and appearance, and it is distinct for each infant. From the infant’s birth until now, concerns about physical and mental development have been in the background. Now fears of potential physical, emotional, or mental disabilities resurface. Parents constantly wonder if permanent health problems will plague their infant. To date, health care providers have been unable to provide definite diagnoses. These developmental concerns bring a new facet to the VLBW infant’s corrected age. Corrected age allows

622 J O C N N

Volume 24. Number 7

Stage 3: Afirming. At stage 3, parents and infant emerge more and more as

Creating Paths

health care providers and parents to adjust the age by taking prematurity into account as they evaluate developmental patterns. Therefore, many parents formulate their expectations based on the infant’s corrected age. Public exposure remains a challenging issue. People have a preconceived notion of what a baby looks like at a specific age, which is why the premature infant’s actual age is a difficult concept for so many people. Just the other day we were talking about celebrating her birthday. When she turns 1 . . . will she really be l ?Developmentally, she will be a little behind. We’ll just do it on her real birthday, the day she should have been born.

Discussion Creating Paths evolved during the grounded theory discovery process, which described how parents live with a VLBW infant. Creating Paths is the process through which parents learn about, adapt, and provide care for their VLBW infant. This process begins during the infant’s first 5 months of life at home. After careful analysis, the grounded theory Creating Paths was chosen to represent the experiences of parents with VLBW infants. In their journey down the created path, parents and the VLBW infant emerge as a family constantly evolving. The family assumes patterns and organization within the context of these inductive stages. These patterns constantly change as the family interacts with the environment. Moreover, some changes may result from a maturation process, such as the VLBW infant’s developing nervous system. As parents further experience life with a VLBW infant, the paths they create take them in many directions. They face continual challenges filled with contradictions. For example, when is it safe to take the baby out in public?What are the markers-weight, time, or developmental cues? Do they use real or corrected age for anticipating social and development stages? By experimenting, parents learn to engage their path effectively.

Life with a very-low-birth-weightinfant becomes a process of continual and precarious balances: Parents modify their behavior and develop strategies to cope with their very-low-birth-weightinfant.

~

Creating Paths includes three stages: gathering, emerging, and affirming. Each stage identifies and accounts for a variety of behavior patterns and reflects changes made over a period of time. These three stages may occur at different times and may replace each other.

September 1995

The duration of a stage often is determined by events for that given stage. The subcategories within each stage of Creating Paths are mutually exclusive-that is, the subcategories of the sequential stage become the foundation for the next set of subcategories. Therefore, the structure of Creating Paths ultimately reflects how the parents behave within that stage. Empirical data strongly indicate that these stages d o occur and are, by nature, subtle. In this study, parents constantly altered the environment to protect and nurture themselves and their infant. Parents were able to adapt and create changes in the environment through isolation during the first few weeks at home and by deciding who may and may not visit. Therefore, parents created behavioral goals and strategies to help maintain a sense of order, balance, and growth. This finding supported Roy’s (1983) expanded definition of the family because it became viewed as a system adaptive to environmental changes. As described by Bass (1991) and found in this study, during the first 3 to 5 weeks, parents focus on keeping the infant alive and coping with their new situation. Feelings of isolation immediately after discharge were also well documented. Earlier findings regarding interaction between parents and the VLBW infant (Easterbrooks et al., 1987) support the statements of parents during this study. Many parents voiced concerns about how difficult it was to establish a reciprocal relationship with their infant. These comments often were related to the VLBW infant’s behavioral characteristics.

Nurses play a major role in helping parents integrate the very-low-birth-weight infant into their world after hospital discharge.

However, parents did not express concern about the neurodevelopment of their infant. Parents began to question the infant’s development at the third interview 5 months after discharge. This could be related to their priorities in dealing with the most critical issues described in stages 1 and 2 . The work of Gennaro, Zukowsky, Brooten, Lowell, and Visco (1990) supports this finding.

Nursing Implications The findings of this study add to what we know about parental behavior when living with a VLBW infant. Neonatal nurses need to recognize the adaptation process that parents of VLBW infants experience after the infant’s hospital discharge. This will allow nurses to identify behavior patterns that may place the infant and the parents at risk for disunity. For example, the nurse at the bedside

J O C N N

623

CLINICAL S T U D I E S

observes parent-infant interactions while the infant is in the hospital. This provides valuable clues for the bedside nurse to plan for prevention as well as intervention. Nursing interventions might include providing information about the VLBW infant’s feeding habits, temperament, and sleep-wake states.

Conctusion The grounded theory Creatitig Paths depicts the processes parents use to adapt to their VLBW infant. Creating Patbsenhances understanding of these processes by providing descriptions of the behaviors during adaptation. Furthermore, this study establishes a beginning theoretical foundation for assessing the adaptation process of parents with VLBW infants during the first 5 months the infant lives at home. Research is needed to explore how parents of VLBW infants with chronic illnesses, anomalies, or neurologic sequelae adapt after hospital discharge.

Acknotutedgnaents This research was supported by the American Nurses’ association mental health clinical traineeship #5TOMH15155.

References

grams. NAACOG’s Clinical Issues in Perinatal a n d Women’s Health Nursing, 3(1), 174-187. Leonard, C. H., Clyman, R. I., Piecuch, R. E., Juster, R. P., Ballard, R. A,, 8r Behle, M. B. (1990). Effect of medical and social risk factors on outcome of prematurity and very low birth weight. JournalofPediatrics, 116(7), 620-626. Lincoln, Y. S., 8r GUbd, E. G . (1985). Naturalistic inquiry. Beverly Hills, CA: Sage Publications, Inc. McCain, G. C. (1990, April). Family functioning 2 to4 years after preterm birth. Journaloff‘ediatric Nursing, 5(2), 97-104. Minde, K., Perrotta, M., 8r Hellmann, J. (1988). Impact of delayed development in premature infants on mother-infant interaction: A prospective investigation. Journal of Pediatrics, 112, 136-142. Pape, D. E., Buncic, R . J., Ashby, S., 8r Fitzhardinge, P. M . (1978). The status at two years of low birth weight infants born in 1974 with birth weights less than 1001 grams. Journal of Pediatrics, 92, 2 53-260. Pederson, D. R., Bento, S., Chance, G. W., Evans, B., 8r Fox, A. M . (1987). Maternal emotional responses to preterm birth. AmericanJournal of Orthopsychiatry, 57( l ) , 15-21, Pena, I. C., Teberg, A. J., 8r Hoppenbrouwers, T. (1987). The Gesell developmental schedule in Hispanic low-birth weight infants during the first year of life. Infant Behavior a n d Deoelopment, 10, 199-216. Perrault, C., Coates, A. L., Collinge, J., Pless, B., 8r Outerbridge, E. V. (1986). Family support system in newborn medicine: Does it work? Follow-up study of infants at risk. Pediatrics, 108,122-130. Roy, C. (1983). Royadaptation model. In I . W. Clementsk F. B. Roberts (Eds.), Family health: A theoretical approach to nursing care (pp. 255-278). New York: John Wiley 8r Sons. Roy, C. (1980). The Roy adaptation model. In J. P. Riehl & C. Roy (Eds.), Conceptual models for nursingpractice. Norwalk: Appleton-Century-Crofts. Strauss, A. L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press. Szatmari, P., Saigal, S., Rosenbaum, P., Campbell, D., 8r King, S. (1990). Psychiatric disorders at five years among children with birthweights less than 1000 grams: A regional perspective. Developmental Medicine a n d Child Neurology, 32(11), 954-962. Trout, M. D. (1983). Birth of a sick or handicapped infant: Impact o n the family. Child Welfare, 4,337-349. Wariyar, U., Richmond, S., & Hey, E. (1989). Pregnancy outcome at 24-31 weeks’ gestation: Neonatal survivors. Archives of Disease in Childhood, 64,678-686.

Bass, L. S. (1991). What d o parents need when their infant is a patient in the NICU? Neonatal Network, 10(4), 25-33. Behrman, R. E. (1990, Spring). The vulnerable child. California Pediatrician, 27-30. Brooten, D., Brown, L. P., Munro, B. H., York, R., Cohen, S. M., Roncoli, M., 8r Hollingsworth, A. (1988). Early discharge and specialist transitional care. Image, 20(2), 64-68. Caplan, G., Mason, E. A,, 8r Kaplan, D. M. (1965). Four studies of crisis in parents of premature infants. Community Mental Health./ournal, I, 149-161. Chenitz, C., 8r Swanson, J . M. (1986). From practice to grounded theory: Qualitative research in nursing. Menlo Park, CA: Addison-Wesley. Easterbrooks, M., Harmon, R., 8r Macey, T. (1987). Impact of premature birth o n the development of the infant in the family. Journal of Consulting a n d Clinical Psychology, 55(6),846-852. Gennaro, S., Zukowsky, K., Brooten, D., Lowell, L., 8r Visco, A. (1990). Concerns of mothers of low birthweight infants. Pediatric Nursing, 5,459-466. Glaser, B., 8r Strauss, A. (1967). The discovery ofgrounded theory: Strategies for qtialitatiue research. New York: Aldine Publishing Company. Glassanos, M. R. (1980). Infants who are oxygen dependent: Sending them home. MCN: American Journal of Maternal Child Nursing, 5(1) ,42-4 5. Ladden, M., 8r Damato, E. (1992). Parenting and supportive pro-

Eltas Vasquez is an assistant professor and neonatal nurse practitioner at the Untverstty of Texas-Houston Health Science Center School of Nursing and Hermann Hospital.

624 J O C N N

Volume 24, Number 7

Addressfor correspondence: Elias Vasquez, NNP, PhD, Department of Nursingf o r Target Populations, University of Texas-Houston Health Science Center School of Nursing, 1100 Holcombe Boulevard, Houston, TX 77030.