Prolonged Distress of Parents After Early Preterm Birth

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Prolonged Distress of Parents After Early Preterm Birth Ira Kantrowitz-Gordon, Molly R. Altman, and Roxanne Vandermause

Correspondence Ira Kantrowitz-Gordon, PhD, CNM, Department of Family and Child Nursing, University of Washington School of Nursing, Box 357262, Seattle, WA 98195. [email protected] Keywords discourse analysis distress parenting photo elicitation preterm birth

ABSTRACT Objective: To examine how parents describe the distress of early preterm birth in the months and years after the infant’s hospital discharge. Design: Discourse analysis of in-depth interviews and photo elicitation. Setting: Homes or cafe´s in the Pacific Northwest United States. Participants: Parents of premature infants born between 24 and 30 weeks gestation (N ¼ 10) who experienced significant distress in and out of the hospital. Parents participated in the study when their children were between 15 months and 8 years old. Methods: Participants described dealing with prematurity, emotional distress, and parenting in individual interviews and returned for second interviews in which they further described their distress using photographs. Data were analyzed using discourse analysis. Results: Parents described preterm birth, hospitalization, and the aftermath as ongoing traumatic events. Discourses of distress included the Perfect Child, the Good Mother, and the Good Father. Parents used these discourses to reconcile the loss of an idealized birth and parenting after the birth of a premature child. Isolation and Medicalized Parenting were used to explain how parents struggled to interact within their social networks and to parent under challenging circumstances. Conclusion: Participants described their trauma and distress in ways not captured by psychiatric diagnoses such as depression and anxiety. Findings may help nurses be aware of the negative effects of preterm birth and respond to parents’ emotional needs.

JOGNN, 45, 196–209; 2016. http://dx.doi.org/10.1016/j.jogn.2015.12.004 Accepted November 2015

Ira Kantrowitz-Gordon, PhD, CNM, is an assistant professor, University of Washington School of Nursing, Seattle, WA. Molly R. Altman, PhD, CNM, MPH, is a postdoctoral fellow, University of California, San Francisco Preterm Birth Initiative, San Francisco, CA. Roxanne Vandermause, PhD, RN, is the Donald L. Ross Endowed Chair for Advancing Nursing Practice, University of Missouri–St. Louis, St. Louis, MO.

The authors report no conflict of interest or relevant financial relationships.

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reterm birth is one of the most common and significant complications of pregnancy. Although the preterm birth rate in the United States has decreased in recent years to 11.39% (Martin, Hamilton, Osterman, Curtin, & Mathews, 2015), it continues to be higher than in most developed countries. Nearly half of all infants admitted to the NICU are born preterm (March of Dimes, 2011). Very-low-birth-weight infants (<1,500 g) and infants born at less than 32 weeks gestation are the most likely to have a prolonged hospitalization (Bender et al., 2013). The experience of premature birth can have a profound effect on the transition to parenthood and a family’s well-being during early childhood (Treyvaud, 2014), and separation can make it difficult for parents to bond with the fragile infant. Further, parents can be overcome with anxiety about the infant’s health while grieving the loss of a normal pregnancy and birth. Once concerns about survival have passed, parents may worry

about their child’s physical and cognitive development. Neonatal nurses care for newborns using increasingly complex technologies and treatments, which leaves less time to address the psychological health of parents. Numerous researchers described the traumatic experiences of parents during the NICU hospitalization using qualitative methods (Lasiuk, Comeau, & Newburn-Cook, 2013; Schenk & Kelley, 2010; Watson, 2011) and measured high rates of anxiety, depression, and posttraumatic stress symptoms (Alkozei, McMahon, & Lahav, 2014; Lefkowitz, Baxt, & Evans, 2010). Researchers who examined parents’ long-term psychological health after prematurity focused on the prevalence of and risk factors for symptoms of depression in mothers and fathers (Vigod, Villegas, Dennis, & Ross, 2010). A few researchers examined parents’ psychological health, family function, and child developmental

ª 2016 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. All rights reserved. http://jognn.org Published by Elsevier Inc.

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outcomes up to 7 years after preterm birth (Huhtala et al., 2014; Treyvaud, Lee, Doyle, & Anderson, 2014). However, by using a quantitative approach, they did not explain how parents make sense of their experiences of prematurity and distress in the years after the infant comes home from the hospital. We investigated the distress of 10 parents long after their preterm infants had left the hospital to understand their perspectives on the long-term effect of preterm birth. We added photo-elicitation methods to qualitative interviews to facilitate deep inquiry into complex emotional and traumatic experiences.

Literature Review The distress of parents, as measured by screening tests for depression, anxiety, or posttraumatic stress, was initially elevated while their infants were in the NICU but declined in the first year after hospital discharge. In a subset of parents, the symptoms continued for years after the preterm birth (Holditch-Davis et al., 2009). The risk factors for mothers for continuing depression 2 years after preterm birth included demographic characteristics (unmarried, lower education level, lower income, or teenage), infant health (worry about infant health, illness severity, or infant rehospitalization), and social factors (stress in the maternal role or decreased family support; Miles, Holditch-Davis, Schwartz, & Scher, 2007; Poehlmann, Schwichtenberg, Bolt, & Dilworth-Bart, 2009). Increased number and severity of risk factors were correlated with persistent depression symptoms. Similarly, mothers’ posttraumatic stress symptoms were significantly elevated through 14 months after preterm birth compared with those of mothers who gave birth at term (Kersting et al., 2004). Fathers were also at risk for depression, and in one study, 13% of fathers had elevated depression scores 2 years after the preterm birth (Huhtala et al., 2011). In most qualitative studies, researchers examined the experience of parents during the NICU hospitalization. In a study 1 year after preterm birth, the long-term emotional responses of mothers to preterm birth included guilt, defensiveness, and loss of control (Garel, Dardennes, & Blondel, 2007). The distress of parents may also affect the relationship between them and the child born preterm into the preschool years. A woman’s depression after preterm birth has been correlated with negative perception of her child’s social abilities (Silverstein, Feinberg, Young, & Sauder, 2010) and behavioral and emotional problems in the child

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Little is known about parents’ distress after the early preterm infant comes home from the hospital, when parent–child interactions are crucial for child development.

(Huhtala et al., 2012). Depression and parenting stress in both parents at 2 years was associated with child behavioral problems at age 3 years (Huhtala et al., 2012). As far out as 7 years after preterm birth, comparisons with families who had infants born at term showed increased stress, anxiety, and poorer family functioning (Treyvaud, Lee, Doyle, & Anderson, 2014). A potential explanation for the connection between parents’ distress and poor childhood social, behavioral, and emotional development is the parents’ perception of child vulnerability. The technology-rich NICU environment establishes the preterm infant’s vulnerability from the first moments, and the identity as a vulnerable child may be reinforced after hospital discharge by the need for follow-up surveillance at high-risk child development clinics. In a meta-analysis of studies on parent perception of child vulnerability after preterm birth, Tallandini, Morsan, Gronchi, and Macagno (2015) found a correlation between a mother’s psychological status and parents’ perception of child vulnerability. This highlighted the importance of parents’ perceptions of child outcomes, but little is known about their perception of prematurity and distress in the long term. In this study we began to address this gap in the literature by asking parents about their long-term distress without restricting them to a psychological framework. The distress of parents is modified, in part, by societal norms for emotional and psychological responses to the challenges of preterm birth. Underneath these responses are beliefs that shape how parents understand their roles and experiences. These beliefs, or internalized discourses, can influence how parents think, talk, and act after preterm birth. The purpose of this study was to understand how discourses of distress affect the psychological and social responses of parents at least 6 months after preterm birth.

Methods We used two complementary data collection methods: interviews and photo elicitation. Interviews are a standard approach to collect data on the phenomenon of interest. However, critical social theorists acknowledge that there is a power

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differential between the interviewer and the participant (Mishler, 1986). The interviewer– researcher sets the agenda for the encounter and directs the questioning toward answering the specific aims of the project. Photo elicitation was used to complement the interviews and to collect data that were participant driven, reflective, and creative. This facilitated the expression of abstract, difficult, or sensitive feelings that may have been challenging to express in words (Burke & Evans, 2011; Frith & Harcourt, 2007). Analysis of the photographs was conducted by the interviewer and the participants during the second interview and by the research team (Oliffe, Bottorff, Kelly, & Halpin, 2008) Discourse analysis is a method of qualitative research that has been used by nurseresearchers to investigate diverse topics (McCloskey, 2008; Springer & Clinton, 2015). According to McCloskey (2008), “Discourse is a belief, knowledge or practice that constructs reality and provides a shared way of understanding the world” (p. 24). Discourses specific to nursing as a discipline and to the institutions in which nurses work maintain systems of nursing knowledge and power (Foucault, 1973). These discourses place families and health professionals in positions that determine the range of choices available to them. Discourses can be taken for granted and remain hidden until exposed through analysis of research participants’ words. Because parenting after preterm birth begins in the NICU, there is initially a power differential between parents and health care providers. Examining the discourses in parents’ narratives reveals the ways that parents develop their role and identity as parents in this unexpected context. As photography has become more accessible with the development of disposable film and inexpensive digital cameras, research methods that use photography have become more common (Burke & Evans, 2011). When research participants select photographs for analysis, they exercise control at multiple steps: composing the photograph, inclusion in the collection, and providing the context of the photograph in a caption or narrative. The discourses operating in the context of the research study can influence these choices before the participant returns to the researcher with a collection of photographs for analysis. Through the camera’s lens, the participant captures a view of the world to describe and share during the research interview (Hansen-Ketchum & Myrick, 2008). The photographs become a scaffold upon

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which the participant builds a narrative; in this manner discourse analysis and photo elicitation come together synergistically to allow a deep analysis of phenomena. A detailed rendering of the use and analytical process of photo elicitation in our study has been published previously (see Kantrowitz-Gordon & Vandermause, 2015).

Sample and Setting A purposive sample of 10 parents of preterm infants (5 couples) was recruited in the fall of 2012 through the spring of 2013. Participants self-identified as having had distress at least 6 months after preterm birth. Inclusion criteria were as follows: the infant or infants were born at less than 32 weeks gestation or less than 1,500 g birth weight, participants were English speaking, participants lived together in a committed relationship, and participants were willing to engage in two interviews and photo assignments. Exclusion criteria were as follows: the infant had major congenital anomalies, had died, or had not yet been discharged from the hospital. The interviews were conducted in a place selected by the participants, typically in the home or a public cafe´, in the Pacific Northwest United States. The final cohort of participants included 10 parents from three heterosexual couples and two lesbian couples. Parents were 34 to 47 years old at the time of their participation and identified as White (n ¼ 8), Asian (n ¼ 1), and Black/White (n ¼ 1). The preterm infants were born between 24 and 29 weeks gestation and included two sets of twins. At the time of the interviews, the children’s ages ranged from 6 months to 7 years.

Data Collection Participants were recruited as couples, although they participated separately in the research. This facilitated free expression by participants, avoided conflict between partners, and allowed multiple perspectives and accounts within a family’s experience (Oliffe, Kelly, Bottorff, Johnson, & Wong, 2011). Data were collected through oneto-one semistructured interviews, which explored each participant’s experiences of prematurity, parenting, and distress (Table 1). After the first interview participants were asked to take digital photographs that represented their distress of prematurity, and these photographs were discussed at the second interview. The initial and photo-elicitation interviews were audio recorded, lasted approximately 30 to 90 minutes, and were transcribed by a professional transcriptionist. Participants’ interviews and photo assignments were done separately to allow different experiences and perspectives to emerge in the data.

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Table 1: Semistructured Interview Guides Initial Interview

Photo-Elicitation Interview

 Tell me the story of your premature child’s birth.

 Tell me about this photo.

 What was it like to become a parent in the NICU? What were

 Why did you choose to take this photo? What does it mean?

the challenges? What kind of social support was available

 Were there any pictures you wished you could

in the NICU? Afterwards?  Did you have trouble dealing with term births of friends/family?

have taken but circumstances prevented you?

 Tell me about your distress (persistent difficult emotions, feelings, or worries about your child).  Have you felt isolated? Did you feel guilty (to blame) for the preterm birth?  Tell me about your partner/wife/husband’s distress then and now.  How did you think and react to his/her distress?  How has it been to be a partner/husband/wife under distress?  What is the meaning of this distress? Is it normal? Does it require medical attention? Why or why not?  How has it been to be a parent to a premature child after coming home?  Do you worry about your child?  Knowing that your child was born early, do you think about him or her differently?  What is your division of labor as parents?  Have you thought about future pregnancies or children?

Participants were asked to not discuss their interviews or photograph selection until after their participation was complete.

Ethical Considerations Study procedures were approved by the institutional review board of Washington State University. Participants gave written consent for the research use of transcripts and photographs. Participants were asked to avoid identifying features such as faces or locations in the photographs. Any identifying features of the photographs were masked before dissemination in presentations or publications. All names were replaced with pseudonyms chosen by the participants.

Data Analysis We conducted a discourse analysis of the interview transcripts and photographs using a team approach. Team members included nurse researchers and doctoral students with experience in qualitative research. The analysis used a combined approach to discourse that has been described by Parker (1992) and Willig (2013). From the perspective of Foucauldian discourse analysis, discourses were examined for how they constructed persons’ identities and how they may have constrained their words and actions.

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The discursive psychology approach, however, allowed the examination of participants as active agents, choosing from different discourses to achieve social goals in different contexts. Using both analytic approaches made possible a more nuanced approach to understanding. The first step of data analysis was a preliminary reading of the transcript to develop familiarity. This was followed by coding, which is the selection and categorization of texts relevant to the research questions. From the selected texts, the research team identified explicit and implicit discourses that guided parents’ talk about preterm birth and distress. The next step was to identify the objects and subjects constructed by the discourse; the capabilities and functions of objects in the text; and what subjects said, felt, or performed, as constrained by the discourse. We examined the interpretive repertoires that participants use in constructing their narratives in different contexts and identified the goals and consequences of using these repertoires. Comparisons and interactions among discourses were explored, and dominant and resistant discourses were identified. Finally, institutions and power relations that were supported or subverted by the discourses were investigated. The texts

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were reexamined to validate the conclusions as interpretations of the discursive constructions developed (McCloskey, 2008). We selected excerpts from the texts to serve as examples and evidence for analytic findings (Wertz, 2011). The photographs were analyzed as an additional source of data using an adaptation of Oliffe et al. (2008). The multistep approach included understanding the photograph based on the participant’s elicited description, looking broadly at the social context and values within a participant’s set of photographs, and connecting photographs identified in the discourse analysis of the texts. The linkage between text and photograph was maintained throughout the analysis. An iterative and inductive analysis proceeded during the several months of data collection. Research team members conducted individual reading and analysis of transcripts and then came together to discuss our analyses. Team members worked to achieve a common understanding of the discourses while remaining open to alternative interpretations. This is consistent with the theoretical foundation of discourse analysis methodology that acknowledges the existence of multiple perspectives and realities, in which participants can use different and seemingly contradictory discursive strategies based on their social goals in context (Willig, 2013). We agreed that the data had achieved saturation after the final couple had completed their sets of interviews. Credibility of the discursive model was evaluated using four criteria: coherence, participant orientation, new problems, and fruitfulness (Potter & Wetherell, 1987). The separation in time between the initial interview and the photo elicitation provided an opportunity for each interviewer and participant to reflect on the initial interview and check for credibility in the data.

baby. And I couldn’t—I couldn’t face the thought of her not being alive. This fear continued after discharge from the hospital when infants faced new health challenges. The interviews were emotionally laden despite the years that had passed since the births. Two sets of discourses emerged: (a) Idealized Identities: The Perfect Child, The Good Mother, and The Good Father and (b) Difficult Relationships: Isolation and Medicalized Parenting. These discourses are summarized in Table 2.

Idealized Identities The reality of preterm birth conflicted with parents’ idealized images of themselves and their children. The distress from this reality was profound and lasted long after the discharge home from the hospital. The Perfect Child. Participants had high expectations for a healthy infant and a normal birth and postpartum experience; the failure to achieve this ideal after a preterm birth caused great distress long after discharge from the hospital. Marks on the child’s body reminded parents of the traumatic beginning: calloused heels from repeated blood draws, semipermanent depressions from nasal cannulas, and scars from surgical procedures.

Table 2: Discourses of Distress Discourses

Examples

Idealized Identities Perfect Child

Natural birth Breastfeeding Child’s body Milestones

Good Mother

Guilt Heroic feeding

Results The trauma of having a very early birth was an important context for the distress of the participants. Parents feared that the newborn would die as a consequence. Even when the woman’s health was in danger, the focus was solely on the newborn:

Placing family first Good Father

Return to work Finances Emotional strength

Difficult Relationships Isolation

Physical separation “They just don’t understand”

I was so scared. I was so scared before I pushed because I didn’t want to push because—I don’t know—lose her. And I wanted to give birth to my baby. My live

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Medicalized Parenting

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Medical equipment in the home Painful procedures Medical errors

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Parents experience anxiety from the ongoing struggle to achieve normal growth and development for the preterm child.

birthdate, repeatedly reminded parents of preterm children that their children’s development did not progress like that of term children. When the child did not meet the term milestones, parents needed to correct for gestational age, but the doubt about developmental delay remained (Figure 2). Figure 1. “Stress over my child’s IQ.” One mother paid for donor milk for her son because she was worried about cognitive delays.

Parents went to extreme measures to help their infants achieve optimal health. The concern about the child’s physical and cognitive development lasted for years and focused on growth and development. Unable to pump any longer after 5 months of breast pain, one mother stopped pumping and paid for donor milk to help her son make up his “loss of IQ points” (Figure 1). For this mother the provision of breast milk went beyond her fulfillment of an expected activity as a mother. A desire to repair the potential cognitive harms of prematurity led her to make great financial sacrifices to provide the human milk that she was unable to produce. The Perfect Child discourse positioned parents to compare their children with those born at term and to compensate for actual or potential deficits. Developmental milestone handouts, which are periodically mailed by the Department of Health to parents of all children based on the

During the years of follow up after preterm birth, parents faced an ongoing fear that long-term disabilities would be discovered: lung disease, retinopathy of prematurity, and cerebral palsy. Parents described the ongoing uncertainty as waiting for the “other shoe about to drop.” When one of twin children showed signs of possible cerebral palsy, he began to receive intensive occupational therapy. The mother framed this work as an effort to achieve “normal” rather than a focus on a more specific functional goal (Figure 3). This background fear of an imminent health crisis was reinforced repeatedly by medical evaluations and follow-up visits at high-risk clinics. Ongoing evaluation at the high-risk clinic took its toll on parents: reassurance was tentative and only lasted until the next evaluation or test. This led to anxiety and panic before every followup clinic appointment. When diagnoses included failure to thrive or developmental delay, parents felt judged and internalized the diagnoses as reflections on their parenting abilities. This was especially true for participant mothers, who connected their performance of motherhood with the child’s health and well-being.

Figure 2. “None of those mailers ever applied to us.” Parents were distressed because typical milestones were

Figure 3. “Just a long road of trying to be normal.” Parents

not appropriate for their children.

feared a looming health crisis.

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The Good Mother. The Good Mother discourse had a powerful influence on mothers’ parenting behaviors. Although most women in the United States return to work postpartum (Laughlin, 2011), the division of labor between parents has continued to place more responsibility for parenting on women (Knudson-Martin & Mahoney, 2009). The pressure on women in this study to be good mothers led them to feel guilty about failure to carry the pregnancy to term, to take extended leaves of absence from work, and to take heroic measures to provide breast milk. Women felt guilty about failing to achieve fullterm pregnancies, even though they recognized that the early birth was not their fault. Their own reasoning did not alleviate their sense of guilt: I didn’t do anything crazy when I was pregnant. I wasn’t drinkin’ and doin’ drugs and bungee jumping. You know, like I was just being boring . I think there’s always that feeling of guilt. Like this is my responsibility. I was the one carrying them. Another woman felt guilty 5 years after her membranes ruptured when she went to the bathroom in the middle of the night. The shame from this confession was so strong that she had never shared these thoughts with her husband. The Good Mother discourse compelled mothers to breastfeed. Breastfeeding was especially important to protect preterm infants from infection. If nursing the infant at the breast was not possible because of the infant’s prematurity, the participants believed that a Good Mother would pump: The whole pumping experience was really sad. Each time I did it, I felt sad. And I did it for 5 months. It probably was one of the hardest things I’ve ever done. And I never got to breastfeed—it broke my heart. For this mother pumping the breasts took more effort, provided less physical connection to the infant, and resulted in emotional and physical pain (Figure 4). She pumped despite these challenges because it was an expected behavior to ensure the health of her child. Conforming to The Good Mother discourse reminded her daily how she could not achieve direct breastfeeding, an idealized image of The Good Mother. The sense of loss from not being able to breastfeed

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Figure 4. “Painful and awful.” One mother was never able to breastfeed her infant, and pumping was physically and emotionally painful.

compounded the desire for a term birth in the future, which would provide another chance to be a Good Mother. Another way that women conformed to The Good Mother discourse was by prioritizing time with the infant over their careers. Whereas all of the fathers returned to work relatively quickly after the birth, the mothers took extended time off to be with their infant in the NICU and at home afterward. Some did not return to work for years because of the risk of infection from placing them in daycare. In the two lesbian couples, however, this decision did not default to the birthing woman staying home. Instead, the decision to return to work for each lesbian mother was a nuanced consideration of maintaining family income along with the need to preserve each woman’s career. Self-employment and part-time work were strategies to achieve these multiple goals for the lesbian couples. The Good Mother discourse raises the issue of mental health that accompanies life challenges. Some mothers disclosed that they had been diagnosed with depression or posttraumatic stress, yet these conditions played a minor role in

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their accounts of distress. Further, none of the photographs selected to represent distress referred directly or indirectly to mental illness or symptoms. The participants explained any psychiatric diagnoses as natural consequences of their traumatic experiences or as preexisting conditions not relevant to the prematurity experience. Their entire focus was on their children, and when they treated their own psychiatric conditions it was so that they could better meet the needs of the preterm children. Being The Good Mother was, thus, unrelated to mental health diagnoses.

Figure 5. “This just killed us financially.” Parents of preterm infants experienced significant financial burdens.

The Good Father. In the heterosexual couples in this study, the fathers showed very different reactions to the preterm births and had different ways of expressing their distress. They moved toward more traditional masculine parenting roles and returned to work quickly after the preterm birth. Families assumed that the mother would stay with the ill infant in the hospital or at home after discharge. Even though all the women had been employed full-time, the man’s career took precedence. One father explained his quick return to work:

Another way that these fathers modeled The Good Father discourse was to present themselves as having mild emotional reactions, whereas their partners were more emotionally reactive to the premature birth. They highlighted their different reactions as gendered differences. Mothers supported this masculine diminished emotionality because it allowed them the freedom to “fall apart, and . he would still be there for all of us.”

Difficult Relationships I wanted to maintain my—my job, too, understanding that it would be—you know, it wasn’t something that was going to get better, you know, in a few weeks, but that it was going to be a long-term process and that I couldn’t let it completely wreck my career. Nevertheless, the dominance of work and career made it more difficult for fathers to connect with their vulnerable infants. One father remarked how he “didn’t really know him that well. . So it’s not like I knew his personality was, you know, super attached.” Both parents felt sadness about the lack of equity in parenting roles and how it limited them in achieving their idealized roles. The prominence of work in one father’s role was problematic when financial challenges resulted from the preterm birth. Astronomic medical bills left the family in bankruptcy and foreclosure. Because this father assumed work and financial security as his primary parenting role, he felt responsible for the family’s financial failure (Figure 5). The shame of financial devastation continued for years and left him feeling insecure even in recovery.

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The early preterm birth had profound effects on the relationships these parents had with their social networks (friends and extended families) and with their children. The desire to protect their children from infection and other long-term consequences of prematurity shifted the focus of parenting activities toward medical activities and functions. Isolation. Early preterm birth and the time in the NICU is an isolating experience for parents involving separation from the outside world, infants hidden in incubators, and restricted access. Parents looked forward to a more normal life after hospital discharge but found themselves facing a different kind of isolation in the home. For some this resulted from the infant’s ongoing vulnerability to infection and fears of hospital readmission: “We were home for three years. They were in the isolation basically in our house. So they weren’t allowed in, you know, play groups or preschool or anything like that ’cause their immune systems were so weak.” Parents of preterm infants also reported a deep disconnect from family and friends who had healthy term infants. Participants described

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losing close friends after the preterm birth. The failure to understand continued after discharge from the hospital. Friends and acquaintances did not understand the infectious risks preterm infants faced from respiratory syncytial virus and the need for limited social contact with preterm children. Parents of preterm infants had difficulty relating to the concerns of parents of term infants. Their issues seemed trivial or petty compared with their concerns about development, life-threatening complications, or challenges at daily functioning. Parents found some gifts they received entirely inappropriate for their circumstances (such as the gift of a bib when children were not consuming food orally), which then increased their distress and their Isolation. Participants also faced challenges in connecting with other families of preterm infants. Mutual support was difficult because the contact evoked painful memories of trauma, new fears, or comparison of their infants’ growth and medical conditions. The intensity of feelings and concerns about their own child left parents with little emotional energy to consider the condition of another family’s child. Medicalized Parenting. Early parenting after preterm birth is constructed and practiced in the NICU under the guidance and control of NICU nurses and physicians (Lupton & Fenwick, 2001). For the sicker infants this resulted in a medical focus to parenting activities and a reliance on medical technology. The replacement of parenting with medical tasks was particularly evident in the families of infants that had chronic health issues after NICU discharge. The needs to maintain home oxygenation, feeding tubes, or tracheostomy care put demands on parents to become quasi-nurses. This also turned the home into a medical environment. Photographs showed medical equipment throughout the home, including emergency airway management and instructions for cardiopulmonary resuscitation, cabinets full of medical supplies, and oxygen tanks in the closet (Figure 6). Parents were given extra training by nurses to ensure safety in the home before discharge: “I felt like one thing the NICU gave me was I became—I was like a trained baby nurse.” Illness care activities were time consuming and left little time for this parent to nurture and interact with her infant at home:

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Figure 6. “Running a home hospital.” Parents felt they had to replace parenting with medical tasks.

Sometimes I feel like I spend all my time nursing him and I don’t get a chance to like read him books and be his Mommy and just cuddle because I’m like filling a feeding bag, mixing this and checking that.. And my calling isn’t to be a nurse. It’s to be a mommy. Parents were distressed by participating in painful procedures such as helping restrain the child during medical procedures or replacing feeding tubes. Parents did not want to do “awful things to [their] children” and felt powerless to explain this betrayal to the child. Parents’ vigilance in the home was heightened by the experience of medical errors. For example, one mother described an incident when a home ventilator was accidentally reset to adult settings during a home visit and safety check: “If they’d blown up both of his lungs, he would’ve been right back in the ICU for months. That would’ve been horrible. We’d made so much progress. I was livid.” As a consequence of this incident, these parents became even more vigilant in the home, more restrictive of visitors, and more worried about intrusions and dangers. The agency responsible for the error was barred from returning to their home. This further reinforced the mother’s need to function as a health care provider for her son rather than as a parent. The discourses identified in this study contributed to an overall sense of profound Isolation after hospital discharge. Perceived vulnerability of the preterm child may have contributed to parents’ isolation by driving behaviors to protect the child from infections and rehospitalization. Parents restricted visitors to the home and excursions

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outside the home to avoid respiratory infections such as respiratory syncytial virus. An additional contributor to isolation was a gap in understanding that had developed between them and friends or family because of perceived fundamental differences between the parenting of preterm and term children. Some parents lost friends who did not know how to respond to or support the preterm child’s family. The added distress of this isolation illuminates opportunities for intervention.

overall mental health (regardless of psychiatric diagnoses), level of social support, and parenting support may mediate the relationship between prematurity and perception of child vulnerability. In our study, little attention was given by parents and health care providers to any of these factors. This was a missed opportunity to ameliorate the effect of preterm birth on their perception of the child. The mental health and social support of parents need greater attention after NICU discharge for the benefit of parents and their children.

Discussion

There is a need for more research on the relationships among social support, isolation, and mental health in families of preterm infants. Peerto-peer support for parents of preterm infants has been explored in family NICU programs (Macdonell et al., 2013), but there is a need for more evaluation of the benefits and best practices for provision of social support during NICU hospitalization and during early childhood.

In this study, parents of very-low-birth-weight preterm infants reported high levels of distress around the premature birth of a child long after discharge from the hospital. Their distress resulted from the incongruity between their anticipated identities as parents of a healthy child and the reality of the ongoing struggle to achieve a normal childhood and development. Further, parents faced isolation during these years and a parenting experience that was dominated by medical activities. To our knowledge this is the first study to explore in depth parents’ accounts of distress long into the parenting of a premature child. The use of photo-elicitation methods facilitated participants’ expressions of distress and provided a meaningful approach to sharing the extent and quality of their distress. Most of the parents in this study continued to feel distress about their preterm child’s failure to become The Perfect Child that they had imagined. This is congruent with the results of investigators who have found that mothers of preterm infants can have more negative representations of their infants compared with mothers of term infants (Silverstein et al., 2010). More recent research has conceptualized this negative perception of the preterm child as increased vulnerability (Tallandini, Morsan, Gronchi, & Macagno, 2015). Parents with significant symptoms of depression, anxiety, trauma symptoms, and low social support were more likely to perceive the preterm child as vulnerable 6 months after initial assessment (Horwitz, Storfer-Isser, et al., 2015), and an intervention to decrease these symptoms reduced that perception of vulnerability (Horwitz, Leibovitz, et al., 2015). Similarly, early parenting support in the NICU can improve parents’ confidence and positive outlook on their infant’s future (Cataudella, Lampis, Busonera, & Zavattini, 2015). Thus parents’

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Parents in this study felt distress from their inability to achieve their expected role as parents. For mothers this included the struggle to breastfeed, guilt about not carrying the pregnancy to term, and taking extended leaves from work. Fathers were driven to take the traditional role of providing family income at the expense of developing a stronger relationship with the preterm child. For ill children, parenting nurturing activities were replaced by medical support activities such as tube feedings and ventilator care. There is a need to develop and implement strategies to foster expected parenting activities and roles after preterm birth.

Implications for Practice Despite the length of time since discharge from the NICU, parents continued to feel the trauma from the preterm birth and subsequent hospitalization. Specific nursing care actions during the NICU stay could mitigate immediate distress and set a navigable path to alleviate distress in the long term. Intermittent skin-to-skin care (modified kangaroo care) has been implemented in U.S. hospitals with benefits to breastmilk production and duration, parent satisfaction, improved sleep, and decreased infant pain during procedures. The presence of monitors and ventilators need not be a barrier to this practice (Baley, 2015; Flacking, Ewald, & Wallin, 2011). There is a need for greater support for lactation after preterm birth and for banking of human donor milk when mothers are unable to produce enough milk for their infants (Bertino et al., 2013). Behavioral

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There is a need to address the physical and emotional isolation of families after early preterm birth.

interventions that focus on the relationship between parents and preterm children have shown promise in improving parent–child interactions and psychological outcomes (Melnyk, Crean, Feinstein, & Fairbanks, 2008). Key elements in these interventions include educating parents on preterm infant behaviors and characteristics and helping parents read their infants’ behavioral cues. This leads to increased parent involvement in routine care of the infant and decreased anxiety. Given that in our study we identified experiences of prolonged distress long after discharge from the NICU, we believe that nurses are well positioned to help parents during the early years of parenting a preterm child. Even though time may have passed since the traumatic events of preterm birth, opportunities to tell their stories and have their distress and feelings of guilt and child vulnerability acknowledged may benefit parents. Nurses should avoid words like developmental delay and failure when they discuss the health of premature children and should choose alternatives that focus on positive manifestations of health. Some parents may need additional help as they handle the stress of parenting a vulnerable child. They should be screened for psychological concerns such as anxiety, depression, and posttraumatic stress disorder and offered referrals to appropriate evaluation, counseling, or support groups with other families with similar experiences. Because of their focus on the wellbeing of the child, parents may be reluctant to address their own emotional needs. Nevertheless, letting them know that services are available and that nurses are ready to listen may open the possibility for future acceptance of services. Where such services do not exist, nurses should advocate for the development of programs to address the needs of these families. Programs should include information on the range of effects of prematurity on the family, such as the effect on siblings and finances, and offer long-term support for these families. Although parents in this study were resistant to connecting with other families during the NICU stay, they may be more open to such support later when they are parenting at home.

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Parents of preterm infants are appropriately concerned about the prevention of respiratory infections and rehospitalization. Nurses should educate these families on evidence-based practices such as hand washing, delayed entry into day care during the respiratory syncytial virus season, and continuation of breastfeeding (Haerskjold et al., 2015; McGrath-Morrow et al., 2010; Ralston et al., 2014). Limiting all visitors to the home and avoiding public places such as parks should be discouraged because this may cause social and emotional harm to these families. Maintenance of the child in “quarantine” supports the parents’ perception of the child as vulnerable. Nurses can strengthen support for families of preterm children through public education on the needs of these families. Extended families and friends of parents with preterm children want to help them, but they often are unsure of what they can do and how to be sensitive. Nurses can provide this information and identify specific supportive and unsupportive behaviors through printed handouts, the Internet, and other media. Many parents photograph their children as a way to document and celebrate their journey after prematurity. This phenomenon has yet to be exploited clinically to work with parents in understanding their experiences. The clinical encounter is only a small moment in the lives of these families, and photographs may provide a window into the other moments that cannot be appreciated during these brief encounters. Clinicians may use these photographs to develop a therapeutic relationship, help parents express their concerns, and foster a connection between parents and hospitalized infants (Rhoads, Green, Gauss, Mitchell, & Pate, 2015). Parents may also use photographs or video to document concerns about their child’s health that may be hard to demonstrate or replicate on demand in the clinic.

Limitations Interviewing both members of a couple was a novel approach for qualitative investigation of parents’ experiences after preterm birth. Although parents within a couple may share events in their life course, their constructed narratives may differ in perspectives and meaning. This provided a greater depth of understanding within couples and the opportunity to determine shared constructions. For example, the emotional division of labor that allowed greater emotional

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expression by one parent compared with the other was confirmed by the other parent. Because the participant who made initial contact with study personnel helped recruit the other parent, this enabled participation by those who might have otherwise been less likely to participate. It is possible that, because we analyzed the experiences of fewer families in greater depth, variation in the data was left undiscovered. Couple-level analysis was not within the scope of this study; future research may use this strategy to investigate conflict within couples to explain the higher rates of divorce and separation in these families (Swaminathan, Alexander, & Boulet, 2006).

after preterm birth. Further research is needed to better understand the experience of distress and how this relates to parenting the premature child.

Acknowledgment Funded by Sigma Theta Tau International, Psi Chapter-at-Large, and the Western Institute of Nursing.

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As is typical with qualitative inquiry, small sample sizes limit the transferability of findings to all parents who have had a preterm infant. The sample included three heterosexual women, four lesbian women, and three heterosexual men. No conclusions can be made about differences among these subgroups of parents, and this was not a focus of the study. What is gained by indepth interviews of a relatively small sample of parents is the deeper understanding of the range of sources of distress that is not evident in other inquiries. In our study, participants were relatively well-educated English speakers of middle-class income from a specific geographic area in the United States. Nevertheless, in a qualitative study of parenting after preterm birth in the Lumbee tribe, mothers described similar feelings of guilt about preterm birth and vulnerability in the child (Brooks, Holdtich-Davis, Docherty, & Theodorou, 2016). Other groups may have very different sources of distress. Further, we selected parents who continued to experience distress at least 6 months after preterm birth and were interested in participating. Participants who responded to these advertisements could have self-selected as the most upset and passionate about their parenting experiences.

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