INTRODUCTION
When infants are at risk of being born at an extremely premature gestation (22–25 weeks), their parents are faced with important, and ofttimes urgent, life-support decisions that begin in the prenatal period (Wilkinson et al., Reference Wilkinson, Ahluwalia and Cole2009; Tomlinson et al., Reference Tomlinson, Kaempf and Ferguson2010; Haward et al., Reference Haward, Kirshenbaum and Campbell2011). Life-support decisions encompass management of the woman's pregnancy and resuscitation decisions for the infant at birth. Shared decision making between parents and providers is recommended because of the high mortality rates, which vary from 94% at 22 weeks gestation to 28% at 25 weeks gestation (Stoll et al., Reference Stoll, Hansen and Bell2010). The urgent nature of decision making (Haward et al., Reference Haward, Kirshenbaum and Campbell2011), the uncertainty of the infant's outcome at birth and beyond (Janvier et al., Reference Janvier, Lorenz and Lantos2012), the number of providers involved, and, most often, the lack of a prior relationship between parents and providers contribute to challenged decision making. Delivering care in this context is complicated by the fact that it occurs in a highly technical environment that can seem impersonal and anxiety producing (Estes, Reference Estes2007), with multiple ethical dilemmas (Chiswick, Reference Chiswick2008) and potentially divergent parent and provider beliefs about what information matters most when making decisions (Roscigno et al., Reference Roscigno, Savage and Kavanaugh2012).
Perinatal palliative care has been recommended for unborn infants who have a life-limiting or -threatening condition (Hoeldtke & Calhoun, Reference Hoeldtke and Calhoun2001; Leuthner, Reference Leuthner2004; Sumner et al., Reference Sumner, Kavanaugh and Moro2006; Munson & Leuthner, Reference Munson and Leuthner2007), including extreme prematurity (Leuthner, Reference Leuthner2004; Munson & Leuthner, Reference Munson and Leuthner2007; Boss, Reference Boss2010). Perinatal palliative care is an approach to care that aims to provide family-centered care to alleviate all types of suffering, including physical, emotional, and spiritual (Sumner et al., Reference Sumner, Kavanaugh and Moro2006). The limited research that does exist on perinatal palliative care shows the value of this approach to care for families (Wool, Reference Wool2013). An important component of perinatal palliative care is assisting families with decision making regarding treatment choices (Hoeldtke & Calhoun, Reference Hoeldtke and Calhoun2001; Munson & Leuthner, Reference Munson and Leuthner2007). Assisting parents with decisions includes having clear communication to identify the individual values and preferences of the parents and providing options for clinical decision making (Munson & Leuthner, Reference Munson and Leuthner2007).
Clinical guidelines for care of pregnant women at risk of giving birth to an extremely premature infant focus on the importance of counseling families regarding treatment decisions and respecting parental preferences when the prognosis is uncertain (Batton, Reference Batton2009; Wilkinson et al., Reference Wilkinson, Ahluwalia and Cole2009; Griswold & Fanaroff, Reference Griswold and Fanaroff2010; Tomlinson et al., Reference Tomlinson, Kaempf and Ferguson2010). Recommendations include sharing prognostic information based on varying gestational ages, being honest and compassionate, allowing adequate time for discussion, and being sensitive to family beliefs and values. Recently, clinical experts have stressed the importance of assessing the individual family's information needs rather than providing a comprehensive overview of all potential outcomes (Janvier et al., Reference Janvier, Lorenz and Lantos2012).
Beyond these general recommendations for perinatal palliative care and effective counseling, limited research has been done to determine parents' caring needs when faced prenatally with urgent and complex treatment decisions for their infant. In studies of parents' perceptions of antenatal counseling for treatment decisions, investigators found that parents desired emotional support and information (Keenan et al., Reference Keenan, Doron and Seyda2005; Boss et al., Reference Boss, Hutton and Sulpar2008) tailored to their specific situation (Boss et al., Reference Boss, Hutton and Sulpar2008) and with consideration of their values (Keenan et al., Reference Keenan, Doron and Seyda2005; Payot et al., Reference Payot, Gendron and Lefebvre2007). Parents do not want to just be passive recipients of providers' projected clinical outcomes for their infant (Keenan et al., Reference Keenan, Doron and Seyda2005; Payot et al., Reference Payot, Gendron and Lefebvre2007). In our research on decision making for extremely premature infants, we also found that prenatally parents need listening, empathy, and respect for their values, as well as information and an opportunity to give voice to their concerns when faced with prenatal life-support decisions (Grobman et al., Reference Grobman, Kavanaugh and Moro2010; Roscigno et al., Reference Roscigno, Savage and Kavanaugh2012). In examining parents' perceptions of end-of-life care for their infants, it is clear that parents come with values that must be factored in when making life-sustaining or -limiting decisions (Brinchmann et al., Reference Brinchmann, Førde and Nortvedt2002; Brosig et al., Reference Brosig, Pierucci and Kupst2007; Botti et al., Reference Botti, Orfali and Iyengar2009). When it comes to decisions regarding life, death, and disability in infants, parents participate in decisions because it is their role and responsibility to do so (Goggin, Reference Goggin2012).
In this article, we describe how 54 parents at risk of delivering their infant prior to 26 weeks gestation interpreted the caring quality of interpersonal interactions with their healthcare providers within the hospital environment. Knowledge of the ways parents characterize caring and failure to care is a critical first step in providing guidance to practitioners committed to honoring the reality that parents must forever live with the decisions made at this crucial time. These findings can also inform perinatal palliative care providers when assisting parents with decision making before the birth, especially in those situations where there is much prognostic uncertainty.
METHODS
Design
This was a secondary analysis of interview data gathered as part of a larger study. Data from the 46 parent prenatal interviews were included in this secondary analysis. The primary investigator of the original study conducted many of the parent interviews and was, therefore, able to provide context to this secondary analysis. We relied on published criteria (Morse & Field, Reference Morse and Field1995; Hinds et al., Reference Hinds, Vogel and Clarke-Steffen1997; Szabo & Strang, Reference Szabo and Strang1997) to justify the use of these data for secondary analysis. Specifically, the aim of the secondary analysis was congruent with the original aim: sample selection criteria mirrored the original study (English-speaking adult parents at risk for delivering prior to 26 weeks), and the open-ended interviews used to gather the accounts provided rich descriptions of parents' views of interactions with providers.
Participants
Institutional review board (IRB) approval was obtained at the three clinical recruitment hospitals located in a Midwestern state in the United States. Although the original multiple case study included perceptions by providers (physicians and nurses), this secondary analysis focused solely on parents' experiences. Expectant parents were eligible for inclusion if they spoke English, were at least 18 years of age and hospitalized, and if they had participated in prenatal counseling with a physician regarding treatment decisions for their infant because of threatened preterm delivery (22-0/7 to 25-6/7 weeks gestation). A research specialist at each hospital obtained permission from the parents to be contacted by the research team. A total of 40 mothers and 14 fathers agreed to participate. Mothers were of varying gestational age at time of recruitment: 21 to 21-6/7 (n = 1); 22 to 22-6/7 (n = 12); 23 to 23-6/7 (n = 12); 24 to 24-6/7 (n = 11); and 25 to 25-6/7 (n = 4). Most parents were black (n = 31) or Hispanic (n = 15), with a mean of 29 years of age (SD = 7.28) and 12.8 (SD = 4.09) years of education.
Data Collection
The parent interview guide, based on the Ottawa Decision Support Framework (O'Connor et al., Reference O'Connor, Tugwell and Wells1998), was designed to elicit: (a) sociodemographic and clinical characteristics; (b) perceptions of decisions (e.g., parent knowledge of the healthcare condition, information that was given/explained to parents by clinicians, and parent evaluation of the way the information was given); (c) perceptions of important roles of others (e.g., decision roles of parents, family, and healthcare professionals); and (d) personal and external resources used to make the decisions (e.g., support from physicians, nurses, and others to make decisions; skills and advice from others). Most parents chose to be interviewed on the same day they consented to participate. In the multiple case study all participants were interviewed longitudinally from the prenatal period into the postnatal period (prenatal, postnatal, and end of life), yielding a total of 203 interviews. Parents were offered the option of being interviewed separately. Audiotaped interviews were conducted in a private setting and lasted 30 to 45 minutes. Interviews, transcribed verbatim, were checked for accuracy. All data were coded using Atlas.ti 5.7.1 software (2010), with 45% of transcripts double coded. Participants' narratives and investigators' field notes were used as the primary sources to support or refute any final coding conclusions (Lather, Reference Lather1986). The original analysis resulted in 32 thematic codes.
The present secondary analysis involves data from one thematic code: quality of interactions. Before solely limiting this secondary analysis to the quality of interactions theme, data from several other related themes were reexamined to assure that parent descriptions of prenatal interactions were not missed. The rich narrative data contained within this theme, the tone of the language, and the specific word choices used to describe encounters warranted a secondary analysis that was focused on more fully describing parents' expectations of caring (Hinds et al., Reference Hinds, Vogel and Clarke-Steffen1997; Sandelowski, Reference Sandelowski2011).
The theme of “quality of interactions” included parents' descriptions and interpretations of positive and negative interpersonal interactions with their healthcare providers or within the hospital environment. When experiences were perceived as negative, parents offered detailed descriptions, as if they really needed the listener to grasp what it was like to be in their shoes or to argue that there are some “absolutes” that healthcare providers should adhere to when talking to families or making decisions (“they [doctors or nurses] are supposed to” or “a parent should not have to (. . .)”). In contrast, when parents alluded to positive interactions, they tended to gloss over it with generic comments (“the doctor was really good”). Hence, the interviewers had to prompt parents for further details.
We were struck that differences in positive and negative interactions exemplified enactments of the caring processes (or failures to enact), as detailed in Swanson's middle-range theory of caring (Swanson, Reference Swanson1991; Reference Swanson1993). Thus, we employed this theory deductively to guide data analysis. The theory consists of five caring processes: (a) maintaining belief, providing the foundation of caring, which refers to believing in another person's capacity to work through and find personal meaning in his or her experience regardless of the challenges or conditions faced; (b) knowing, striving to understand what an experience means from the perspective of the person living it; (c) being with, which refers to being authentically present with another person in order to convey that their experiences are important; (d) doing for, which means doing for others what they would do for themselves if at all possible; and (e) enabling, involving provision of information, validation, support, and guidance so that the parent can actively participate in decisions (Swanson, Reference Swanson1993).
Data Analysis
Directed content analysis was used to evaluate narrative textual data (Hsieh & Shannon, Reference Hsieh and Shannon2005). We specifically focused on data gathered during the prenatal period where parents' descriptions of decision-making interactions were not confounded by postnatal recall or infant outcomes. Two questions guided data analysis: (a) “What are the parents trying to tell us about how they wish to be treated in the prenatal period when they are at risk for delivering an extremely premature infant?” and (b) “Does what parents tell us agree with Swanson's theory of caring or bring new information to consider related to caring in this context and with this population?”
Data from the quality of interaction theme were independently coded by two experienced qualitative researchers using the Atlas.ti 5.7.1 program. While coding this subset of data, each coder had access to the entire set of interviews, field notes, and case summaries, so they could assure that any impressions were not taken out of context (Morse & Field, Reference Morse and Field1995; Hinds et al., Reference Hinds, Vogel and Clarke-Steffen1997). The two investigators met regularly to discuss the criteria deployed when coding data within Swanson's five caring processes. Individual examples often illustrated more than one of the five caring processes, so the coders decided which caring process best honored the point the parent was trying to make in their story about how they wished to be treated. When any discrepancies in coding were found, additional narrative data or clarifying field notes were sought to achieve consensus (Lather, Reference Lather1986; Szabo & Strang, Reference Szabo and Strang1997).
The positive and negative exemplars of the five caring processes in Swanson's theory of caring and the synthesis of each theme were then shared with a third investigative team member, who also had participated in the data collection and analysis of the original study. The two coders then consulted with the third author regarding their approach to data analysis, interpretations of the caring theory, and preliminary findings. This peer auditing and debriefing process was enacted to assure that the analysis from the two coders reflected the original theory, honored parents' experiences, and did not force the parents' narratives regarding the caring processes (Thorne, Reference Thorne and Morse1994). It also opened the analytic process to alternative ideas before final conclusions were drawn (Lincoln & Guba, Reference Lincoln and Guba1985).
RESULTS
The results are presented within the five caring processes: maintaining belief, knowing, being with, enabling, and doing for. Specific examples are provided to illustrate each.
Maintaining Belief
I would ask them, “From your previous experience as a doctor or a nurse, has anyone survived this, you know, like 28 weeks,” they would say, “Yes.” So, I don't know, sometimes when you first come in, everybody is around [you]; I was feeling attacked, but that's not the right word. I just felt bad, I guess because I really get depressed. I mean if they just have one good thing to assure you, you could just lift somebody's spirit, even health-wise it might take the stress off.
When providers treated parents like they were capable of making the best decisions for their family and acknowledged the infant as a valued and beloved family member, parents experienced their provider as someone who maintained belief in them. Parents needed providers to provide balanced information, which meant sharing stories of survival alongside accurate biomedical information regarding the risks of premature birth and disclosing prognostic uncertainty (Roscigno et al., Reference Roscigno, Savage and Kavanaugh2012). This approach helped parents heed the gravity of the situation without becoming overwhelmed, paralyzed, or hopeless.
Parents wanted their unborn/newborn infant to be referred to as a valuable person with a meaningful place in their family. Even if death or disability loomed, the expected child remained their son or daughter. The words used to engage parents in decision making had to show respect for them and the value of their unborn infant. Parents were quite upset when providers used language that reduced their child to a condition or impairment (Roscigno et al., Reference Roscigno, Savage and Kavanaugh2012). Although parents were uncertain about their child's viability or compromised well-being, they were devastated when they perceived that others framed their unborn child as nothing more than burdensome or nonviable:
I had told my doctor, I had told her, you know, I appreciate everything you all have done for me. I said because you, instead of just let me have the baby early, you all tried to save the pregnancy (. . .) so I said I really appreciate the fact that you all tried.
When providers respected the parents' choices and did not impose guilt or pressure, even when parent decisions were not in agreement with provider advice or beliefs, parents felt the providers believed in them:
So, talking to them made me realize, “Okay, I am in charge,” and they give me that much respect to me to say, you know, okay this is what should be done and that should be done, because actually they do listen. So, I did feel better when they gave me options and choices because sometimes they were just like, “Okay, you are going to do this and you are going to do that.”
Some parents felt that the providers had already decided on the treatment option and were just waiting for parents to agree with them. In these situations, parents described themselves as needing to remain strong to fight for decisions that they felt were in the best interests of their infant (Roscigno et. al., Reference Roscigno, Savage and Kavanaugh2012).
Knowing
You still have to make sure that they understand what's going on because if they don't and they make a decision and come to find out later they didn't feel as though it was [the right thing to do], they felt as though it was rushed or it wasn't the right decision, that is something that you have to live with for the rest of your life.
Knowing meant taking the time to understand what it might mean to be that parent faced with the potential birth of an extremely premature infant. Because parents were making decisions that would impact the quantity and quality of their child's life while simultaneously altering the course of the remainder of their own lives, it was essential that providers honored what the situation might be like for them. Understanding went beyond an intellectual knowing to also include an empathetic understanding of how difficult this decision was for the parents and understanding that they were made vulnerable by the mother's current physical and emotional health and the inherent power differential that can be present in health relationships and hospital systems due to knowledge, language, culture, and access to information issues.
Knowing begins by asking parents about their preferences, listening to what is said, tuning in to what is not said, and avoiding assumptions about what might matter to them:
They came and asked us like, they had asked us what do we want to do when the baby, if the baby comes early. Do they want, do we want the full attention as possible? And we was like “Yeah,” and they agreed with us; you know what I am saying, it was all about what we wanted and they was willing to help with anything.
In contrast, when parents' perspectives were not solicited, providers risked offering advice that at best was irrelevant, and at worst harmful:
The first day I went to [name of hospital], I came home crying, in tears, and [my partner] was like, “What's wrong, what did they do to you?” And I told him, I said, “Well, they keep trying to get me to abort.” And he's like, “What? What hospital is that? What, [do] they get a kickback from the abortion clinic or something?” And I said, “No, they just keep saying that everything will go wrong, everything will go wrong.” He was like, “What, I thought a hospital was to help sick people (. . .)” And so I knew from that point on, that's their viewpoint and how they handle it. And it's the one thing I do not like (. . .) because that makes me uncomfortable.
This mother further described what it was like when people had no idea that their behavior was insensitive and inappropriate. For example, she referred to a provider who dishonored confidentiality and made a flippant comment in front of visitors about the mother's delay in making a treatment decision:
Very inappropriate! Very unprofessional! And if you were to go out there right now, she'd be looking at you confused, “What did I do?” And that's the saddest part, because if you do not realize you're doing something, it is repetitive. It's like that asshole at the Christmas party that's there every year, and every year he gets more annoying and more annoying and more annoying, because he doesn't believe he's annoying.
Knowing requires the provider to step out of their own worldview and accept that parents have personal realities, moral beliefs, and familial circumstances that influence their conclusions:
I think what was most important for me as well as him [father], it was not about, you know, what disabilities the baby may have or what, it was that we were doing what was right. We were not taking this into our own hands for our own desires, you know, what we want. We were doing what was most natural and right to do.
Parents particularly appreciated when providers displayed sensitivity and avoided topics such as their own children and birth stories. They explained how difficult it was for others to really appreciate what they were enduring if they had not gone through the experience themselves. Some felt that genuine compassion was only possible from other parents who had lived through a similar event. One mother talked to a nurse who had been at risk for preterm delivery and described her as one of the only people who really understood what it was like.
Being With
They would really look you in your eyes, and they wouldn't have this tone of voice where it shows this is happening and this is going to happen or, you know, they are very like mellow tone of voice and they are very careful and very concerned about how I felt, like they were saying, “I'm sorry to have to tell you this,” and they would be very, they showed that they cared and that they were not just doing their job, you know, they actually cared about what happened and stuff.
Being with meant physically and emotionally engaging with parents in an unhurried manner and establishing a meaningful connection. When providers portrayed a passion for their profession and spent time with parents, parents felt as if they mattered: “They have love for what they do. It's not just taking care of you and running out of here.” One mother explained how she had repeatedly refused to consent to a cesarean section until one physician took the time to sit with her, explain the rationale, allow questions, and address her concerns.
In contrast, one mother described how providers did not focus on her and instead tuned into pagers, emails, or telephone calls:
I think this has happened with almost every doctor that I have ever had. They sit there, um, you're talking to them and they ask, “Do you have any questions?” You'll start answering [them] (. . .) then their phone will ring, or their pager will go off (. . .) and it totally throws you off because you are like, wow, “Okay I will wait until they get that page” (. . .) like [it] makes your mind go blank (. . .) “Okay, what am I talking to you about?” And then they will ask you a question like, “Do you have, do you want to know anything else?” You have already forgotten because (. . .) it threw you off.
Sometimes providers' clinical detachment was experienced as being in stark contrast to the parents' commitment to doing the right thing for their baby and their family. A mother described what it was like to feel that she and her baby had been clinically objectified by a physician who seemed aloof to the gravity of the emotions that accompanied her decision:
They don't have to look at me again, once I terminate (. . .) they don't feel any real human effect of that, so that's the reason why they are so impartial. They don't have a human aspect to it (. . .) That's why they can push to tell you this, that and the other so quickly and they don't care (. . .) You've just told me you don't care. Nothing you can tell me after that says you care.
Enabling
I want to know everything, and like I said, some people use big words and they don't break it down for the patient, and that is not fair, but that hasn't happened to me here at all, so I appreciate them breaking everything down for me because it is not about the medical terms; it is how you make the other person understand (. . .) I understood and I felt better, and that is why I feel so confident now.
Providers enabled parents to participate in meaningful decision making when they realized that the final decision had to be one that the parents could live with. This meant that, as a team, doctors and nurses took the time to explain options in language that parents could understand, checked back to assure comprehension, and queried for additional desired information. Parents offered similar statements when asked about advice to give healthcare providers (Grobman et al., Reference Grobman, Kavanaugh and Moro2010).
Parents appreciated when physicians took the time to answer questions and reexplain even when other physicians had already talked to them:
I felt like I understood very well (. . .) he was willing to (. . .) take any questions we had. He completely, like even though he knew that another doctor had spoken to us and told us like a bunch of information, he like reviewed it all and made sure we understood (. . .) [asked] if we had any questions. He did a really nice job with that….
Repeated visits by physicians to explain and discuss treatment options were important and recommended (Grobman et al., Reference Grobman, Kavanaugh and Moro2010) because parents often thought of questions only after the physician had left the room. They needed the physician to anticipate that need, provide them with contact information as well as encouragement to recontact, and to be available as questions came to them. It was not helpful for physicians to give information without allowing parents to ask questions:
The thing that wasn't helpful is when you are talking to a patient you can't, you know, just talk, talk, talk, talk, talk, and ask like well, do you have any questions, because that patient may have a question while you are talking, and then once the conversation is done, you have totally forgotten what you were going to ask or even if you ask it, it doesn't come out the same way as it should have.
Parents expected consistency between the providers and were distressed when confronted with multiple providers with differing views. Parents resented having to defend their views to different providers:
You just told me that I had a little bit of time, and I mean for someone, one person says, “You have a little bit of time,” and the next person comes around and says, “Well, have you decided yet because, you know, your water has broken and you know this could happen and this could happen and this could happen, and you know even if you go to this amount of time this could still go wrong.” And it's like, okay, then why didn't you tell me all this the first time.
Being consistent and allowing the parent a reasonable amount of time was especially important because of the life-altering nature of the decisions being made.
Doing for
You know, every day he [the physician] came to see me and, “Hey, how you feeling?” The nurses were in there making sure everything was okay.
Doing for a parent meant creating a therapeutic milieu that anticipated parents' physical, emotional, and informational needs. Prenatally parents felt better informed if they had an opportunity to learn about what might happen after their baby was born. Some described how beneficial it was when they had the opportunity to talk with a neonatologist or when hospital policies allowed parents to tour the neonatal intensive care unit (NICU) before giving birth. Providers anticipated the needs of parents by facilitating contact with sources of support such as calling family members or providing parents access to scrapbooks and stories from parents who had lived through similar experiences.
Doing for meant making the mother as comfortable as possible, preserving her dignity, attending to her physical needs, and making every effort to reduce her stress (Kavanaugh et al., Reference Kavanaugh, Moro and Savage2010). Fathers shared that this attention to the comfort of the mother was very important to the family. One mother described how her nurse gave massages: “They just try to keep you like real calm and stress-free.” Attending to parents' complete needs enabled them to focus on the infant and make decisions.
DISCUSSION
Clinical resources to guide antenatal counseling of parents faced with emergent decisions regarding their baby's imminent premature birth have been developed with limited empirical evidence to guide providers' interactions with parents (Batton, Reference Batton2009; Wilkinson et al., Reference Wilkinson, Ahluwalia and Cole2009; Griswold & Fanaroff, Reference Griswold and Fanaroff2010; Tomlinson et al., Reference Tomlinson, Kaempf and Ferguson2010). Similarly, research evidence to guide perinatal palliative care practice is lacking (Balaguer et al., Reference Balaguer, Martin-Ancel and Ortigoza-Escobar2012) and is an important area for future palliative care research, especially for developing and testing interventions to improve communication between providers and parents (Youngblut & Brooten, Reference Youngblut and Brooten2012). Our examination of parents' descriptions and interpretations of caring and uncaring behaviors has provided insight into specific behaviors that parents value and negatively respond to during their interactions with healthcare providers.
We have learned that, when parents are confronted with the imminent extremely premature birth of a child, they enter into the stressful process of participating in treatment decisions. Our findings support prior research regarding the importance of providing information and emotional support and developing a relationship in which providers learn about parents' expectations and values when engaged in critical decisions prenatally (Keenan et al., Reference Keenan, Doron and Seyda2005; Payot et al., Reference Payot, Gendron and Lefebvre2007; Boss et al., Reference Boss, Hutton and Donohue2009). While helpful support begins with receipt of honest prognostic information in terminology that is understandable, we have found that caring interactions are not limited to diagnostic facts and figures (i.e., the information) given sensitively, and that providers need to develop a collaborative relationship with parents where their point of view and complete needs are honored. Parents need a therapeutic caring milieu that includes the entire multidisciplinary team, where all providers are on the same page with the parents. Our analysis, then, provides support for enacting Swanson's theory of caring for these parents, thus validating the theory in this clinical context. The results of our analysis can also provide research evidence to guide the shared decision-making component of perinatal palliative care.
Parents first need to feel respected and believed in; they need to be recognized for their rights and capacity to make decisions regarding their infant and their current circumstances (maintaining belief). Parents want their perspectives to be solicited and understood for their unique values, fears, beliefs, and hopes for their future (knowing) when decisions are being made about their birth and their child. This information can be the basis for further explanation to correct misconceptions or for incorporation into decisions. Knowing requires emotional intelligence, which is the ability to recognize and understand emotions in one's own self and others, and which also enables one to engage in relationships (Faguy, Reference Faguy2012). Also, knowing (a) is an essential component of relationship-centered care that requires the provider to attend to the family's values and understand the way that each family experiences their child's illness or condition, and (b) is possible only when excellent listening skills, respect, and empathy are utilized (Rider, Reference Rider2011). In our analysis, we found that knowing is especially crucial when parents are involved in a decision-making process where death or long-term disability is highly probable but variable. Yet, medical personnel often have limited preparation to engage in respectful conversations with parents surrounding decision making for critically ill newborns (Boss et al., Reference Boss, Hutton and Donohue2009). Investigators have shown that neonatologists more often view their role as providing clinical information versus discussing the parents' personal beliefs (Bastek et al., Reference Bastek, Richardson and Zupancic2005). When providers do not interact in a way that shows appreciation for the child or the family values, parents are traumatized because they feel the provider is biased, detached, and uncaring, and parents worry about how that might affect decision options for their child.
At times, though, provider interactions may stem from a caring base yet appear uncaring to the parents because they view the situation differently than the providers do. Some providers think they need to challenge parents to think about the future of their infant so that they will not come to regret the decisions they make at this time. A provider may seem callous, detached, and even mean spirited by parents who are being told to imagine caring for a severely disabled child for the child's whole life, but the provider's intention is to give balance to what they perceive as parents' overly optimistic views. Parents rely on hope to get them through this difficult time, but providers worry that the parents are unable to focus on the real possibility of a very bad outcome, and some providers feel they would be remiss in their ethical obligation to fully inform and prepare parents for each possible outcome. Swanson's theory of caring provides the framework for providers to attend to their ethical obligation to fully inform parents but also learn about and respect the family's values.
Providers are better able to create a comprehensive caring environment where knowing is enacted and when there is an organization-wide culture of respect for soliciting parent/family values and needs in order to make the interpersonal encounters unique, meaningful, and not scripted (Leape et al., Reference Leape, Shore and Dienstag2012). Creating a caring environment that considers the sociocultural factors driving individual or organizational behaviors is often challenging. Parents and providers bring different mindsets and expectations to emergent untimely births. Whereas experience may have taught providers that death appears inevitable and disability unrelenting, parents may not yet be ready to envision either reality. Encounters ignited by crises, such as rapidly progressing labor, present real challenges to developing a common understanding and setting mutual goals. During these encounters, care needs to be taken that parents do not feel compelled to surrender to well-meaning providers whose rushed actions are guided by the emerging clinical concerns. Conscientious titration of tenderness with facts calls upon the care team to remain reflective and empathetic while monitoring clinical safety. Much as Swanson and Wojnar (Reference Swanson and Wojnar2004) discussed, a caring approach means preserving the family's wholeness through sensitivity and compassion while minimizing the sometimes mechanical or fragmented aspects of medical care delivery.
Providers can initially enact knowing and show that they value the parents' perspective by avoiding assumptions and eliciting the family story, which will include the hopes, values, and prior experiences or other significant individuals' experiences. The value of knowing the parent as a foundation for communicating and decision making surrounding life-support treatments has been reinforced in neonatal and pediatric palliative and end-of-life research (Brinchmann et al., Reference Brinchmann, Førde and Nortvedt2002; Brosig et al., Reference Brosig, Pierucci and Kupst2007; Botti et al., Reference Botti, Orfali and Iyengar2009; Feudtner et al., Reference Feudtner, Carroll and Hexem2010) and recommended in perinatal and pediatric palliative care (Mack & Wolfe, Reference Mack and Wolfe2006; Feudtner, Reference Feudtner2007; Boss et al., Reference Boss, Kavanaugh, Kobler and Wolfe2011) because it allows subsequent discussions and interventions to be individualized. At the same time, parents need all members of the healthcare team to realize their emotional suffering so that they will be emotionally available to them and ready to reach out to them with empathy and warmth (being with). Parents need sensitive explanations in terms they can understand, honest guidance about all options available to them, and repetition of information (enabling). The provider must be able to explain their medical perspective (knowledge, beliefs, values, goals) while placing their perspective in the context of additional information that may also be important to the parent (realize how the medical perspective may be only one piece of the information that the parents use to make a decision). Providers should elicit the parents' understanding and interpretation of the information that was provided, provide any clarification, and then show respect and trust that the parents can make the best decision for their family if they have all information explained and discussed thoroughly, including any uncertainty about prognosis. Finally, parents need to believe in the dignity of their own family, including how the yet-to-be born child is preserved through others' talk and actions. It is essential that parents' emotional and physical safety needs be anticipated, guarded, and addressed as they focus on the emergent life-altering decisions before them (doing for).
Coordinating interdisciplinary care and communication between all providers is an essential aspect of palliative care but is often lacking when decisions are made for serious health conditions (Widger & Wilkins, Reference Widger and Wilkins2004; Williams et al., Reference Williams, Munson and Zupancic2008; Boss et al., Reference Boss, Kavanaugh, Kobler and Wolfe2011). Hence, parents are left to sort through changes in treatment plans because of differing management philosophies or personal beliefs. Each discipline brings different strengths to bear in meeting the needs of parents. For example, the physician may be the most appropriate person to discuss treatment options, but the nurse might have a fuller understanding of the emotional or continued information needs of the parents and thus serve an essential role in advocating for, informing, and supporting families when end-of-life decisions are faced in acute care settings (Adams et al., Reference Adams, Bailey and Anderson2011). We have shown that nurses can play an essential role in assuring that a safe and comforting environment is provided, one where parents are enabled to participate in decision making (Kavanaugh et al., Reference Kavanaugh, Moro and Savage2010). Currently, a family-centered communication intervention study is underway in adult intensive care where a communication facilitator (nurse or social worker) is employed to improve outcomes for families (Curtis et al., Reference Curtis, Ciechanowski and Downey2012). This area of study is highly relevant to families facing critically premature delivery, and it should be the focus of future research.
Perinatal palliative care has been recommended for those infants whose birth is at the limits of viability. However, a small number of families have access to this type of care. Only about 140 perinatal palliative care programs exist in the United States (perinatalhospice.org), and anecdotal evidence suggests that families who are at risk for having an extremely premature infant are not routinely referred to perinatal palliative programs that might be accessible at an institution. The results of our research can provide guidance for decision making for the many providers who care for parents even when a perinatal palliative care referral is not made. These findings of our analysis might also be relevant for all conditions where perinatal and neonatal palliative care are indicated, including infants who have a serious medical condition that is not responding to intensive intervention in the NICU. The caring processes in the theory of caring further elaborate on those provider behaviors that are recommended for perinatal and neonatal palliative care, including parent-centered communication, shared decision making, hope, and attention to the full scope of the needs of the family (Boss et al., Reference Boss, Kavanaugh, Kobler and Wolfe2011). Results of research on the needs of parents whose infants die in the NICU show that hope, empathy, shared decision making, and emotional support are important aspects of care, thus providing support for the relevance of the theory of caring (Armentrout, Reference Armentrout2009; Moro et al., Reference Moro, Kavanaugh and Savage2011; Branchett & Stretton, Reference Branchett and Stretton2012). Further research should be conducted with parents of these newborns due to the intense moral distress among professionals that often accompanies these clinical situations in the NICU (Janvier et al., Reference Janvier, Nadeau and Deschênes2007; Kain, Reference Kain2007).
On a hospital-wide level, each clinical unit that cares for these parents should evaluate their policies and practices to follow recommendations for family-centered care (American Academy of Pediatrics, 2012) that extend beyond palliative care models. Many of the specific recommendations for family-centered care focus on communication. These recommendations are based on guiding principles, as supported in this research: listening to parents and respecting each child and family; honoring racial, ethnic, and cultural backgrounds and family experiences and incorporating them into planning and delivery of healthcare; individualizing care to the beliefs and values of family; facilitating choice for and sharing honest and unbiased information with families on an ongoing basis and in ways they can understand; and identifying the strengths of families and their abilities to participate in decision making (American Academy of Pediatrics, 2012).
Limitations
Saturation of themes is an important tenet of qualitative research. By using both positive and negative appraisals of caring, saturation of Swanson's caring components was present in parents' narratives, but because our categorizations of caring components were not presented to the parents for their feedback (i.e., member feedback), the findings are limited in their ability to immediately inform change (catalytic validity). While interpretive approaches caution against making generalizations, this analysis does present a perspective that informs future practice and research questions (Lather, Reference Lather1986; Hinds et al., Reference Hinds, Vogel and Clarke-Steffen1997).
CONCLUSION
Parents face difficult treatment decisions when anticipating the birth of an extremely premature infant. Enacting a supportive model of caring such as Swanson's middle range theory of caring, provides a guiding framework for healthcare providers, including those in perinatal palliative care practice, to meet parents' unique needs and engage in a dialogue that ultimately invites them into shared decision making during emergent critical clinical situations. Nurses have the potential to play a key role in enacting this framework within an interdisciplinary team to improve communication and ultimately improve decision making and parent outcomes. Further research should be focused within this area of interdisciplinary communication with and support for parents.
ACKNOWLEDGMENTS
We thank the parents, physicians, and nurses who participated in the original study. Our work was supported by the National Institutes of Health/National Institute of Nursing Research (R01 07904 and P30 NR010680). The second author's postdoctoral training during this analysis was funded by the Irving B. Harris Foundation Faculty Scholars Initiative at the College of Nursing, University of Illinois at Chicago (White-Traut), and the second author's contribution to the manuscript was funded by a National Institutes of Nursing Research postdoctoral fellowship, Interventions for Preventing and Managing Chronic Illness (5T32NR007091-17), at the School of Nursing, University of North Carolina, Chapel Hill. The manuscript contents are solely the responsibility of the authors and do not necessarily represent the official views of the NINR. The final peer-reviewed manuscript is subject to the National Institutes of Health public access policy.
