Abstract
BACKGROUND:
Legacy interventions are standard in most children’s hospitals, but little is known about how bereaved parents understand and describe the concept of legacy that these interventions are designed to Address. The aim of this qualitative study was to understand the legacy experiences and perceptions of parents who have experienced perinatal or early infant (less than three months of age) loss.
METHODS:
Grounded in constructionist epistemology and phenomenological qualitative traditions, ten bereaved parents completed an in-depth phenomenological interview regarding their perceptions of and experiences with the legacy of their deceased child. Interviews were transcribed verbatim and analyzed using an open, inductive coding process to illuminate the essence of participants’ experiences.
RESULTS:
Three themes were identified: 1) legacies are composed of memories and experiences that have a lasting effect on others; 2) healthcare experiences both generate and participate in infants’ legacies; and 3) parents’ legacy perceptions are shaped by cultural conceptions, spiritual beliefs, and grief experiences. Parents described experiences and interactions with community members and healthcare providers that honored or challenged their perceptions of their child’s unique legacy.
CONCLUSIONS:
In the context of perinatal or early infant loss, bereaved parents describe legacy as enduring, unique to each child and family, and heavily influenced by healthcare experiences and staff relationships. Parent-led, legacy-oriented interventions are needed in maternal/fetal, labor/delivery, and neonatal intensive care settings to support parent coping with loss.
Introduction
In 2019, almost 24 000 stillbirths [1] and 21 000 infant deaths occurred in the United States [2]. The loss of a child represents one of the most tragic and stressful events that a parent can endure [3–7]. Additionally, bereaved parents detail the limited time spent with their child and the forfeiture of aspirations they once held for them as particularly devastating elements of fetal, perinatal, or early infant loss [3, 5, 7].
When an infant or unborn child dies, parents and primary caregivers report a constellation of intense and unique bereavement needs and grief sequelae [5, 8] that can surpass the threshold of more adaptive grief response patterns [9]. Especially when a death is unanticipated or ambiguous, leaves behind limited memories and engagements, and there is a notable lack of socially prescribed rituals and services available (as is true of most perinatal losses), the risk of Persistent Complex Bereavement Disorder [PCBD; 10], or complicated grief, is increased [11].
Whether classified as a more typical grief response or PCBD, the intensity of grief following the death of a child engenders harmful physical and psychological outcomes. Bereaved parents are at higher risk of cancer, heart attack, and overall mortality than their nonbereaved counterparts, as well as depression, anxiety, and post-traumatic stress disorder [12]. Additionally, their changing self-perceptions and feelings of isolation further complicate bereaved parent grief and adjustment [5, 8]. Thus, identification and implementation of effective coping interventions for parents and caregivers experiencing fetal, perinatal, or early infant loss is urgent and necessary.
Many children’s hospitals offer legacy-building interventions for surviving parents and siblings [6, 13]; typically provided by Certified Child Life Specialists (CCLSs), creative arts therapists, nursing, or other psychosocial care providers, they are intended to foster meaning-making, remembrance, and positive coping for children and families during challenging healthcare experiences—most often in the case of loss or bereavement [6, 14]. Offered by 92% of children’s hospitals [15], legacy-building frequently includes painted handprints, plaster hand molds, locks of hair, photographs, memory books, videos, and other tangible items [6, 14].
Emerging theoretical perspectives on legacy have sought to emancipate legacy work from the intentional creation of tangible keepsakes; instead, legacy-building interventions are reframed as care interactions grounded in connection, collaboration, and co-creation that need not be limited to the end-of-life period [14, 16]. Legacy in this vein is:
. . . an enduring representation of the self –its qualities, experiences, effects, and relationships –built and bestowed across generations. Whether concrete or intangible, intentional or serendipitous, legacies are an avenue of connection, education, inspiration, or transformation [17, p. 19].
This approach suggests less emphasis on the products of legacy interventions, instead returning to the therapeutic elements of choice, control, and family engagement that well-facilitated legacy experiences offer [18].
Although the conceptualization and clinical applications of legacy are shifting in healthcare, research has yet to explore the legacy perceptions and experiences of bereaved parents in any capacity –let alone the unique case of perinatal or infant loss. To ensure interventions are evidence-informed and family-centered, providers must better understand legacy from the perspectives of parent stakeholders. Therefore, the purpose of this study was to explore the legacy perceptions and experiences of parents who experienced perinatal or early infant (< 3 months of age) loss.
Methods
Exploring the range of parent/caregiver perceptions of and experiences with perinatal or early infant loss required a qualitative research design, which mirrored the authors’ previous research on healthcare provider [13], parent/caregiver [18], and hospitalized children’s experiences of legacy [19].
Site
This study was conducted at an academic medical center in the southern United States, housing a robust maternal/fetal medicine clinic and medical service, labor and delivery unit, three nurseries (general, special, and critical care), a level 1 neonatal intensive care unit, and a tertiary pediatric intensive care unit serving a four-state catchment zone. Annually, the facility reports a mean number of 450 perinatal, infant, and pediatric deaths. The study was approved by the site’s Institutional Review Board (protocol 191997).
Participants
Recruitment letters were sent to primary caregivers of all perinatal and infant (< 3 months of age) deaths at the medical center between 2010 and 2018. More than 65% of letters were returned to sender, due to inability to reach recipient or lack of a forwarding address. Of those delivered, nine families indicated interest in participation; one withdrew before participating due to scheduling difficulties. Across these eight remaining families, ten parents participated (see Table 1 below).
Participant demographics
Participant demographics
Note. N = 10; some participants did not disclose all demographic variables. Other1 denotes plaster foot molds (n = 1), ceremonial objects from the infant’s baptism (n = 2), and paint or ink footprints (n = 1).
Nine interviews were conducted by a principal investigator with doctoral training in psychology and a group of trained graduate students in applied child studies and psychology. Of the nine interviews, five were conducted in person, three via telephone, and one using Zoom videoconferencing. One participant shared her insights via email due to social barriers. Each interview lasted between one to three hours and included 1) a brief demographic and legacy experiences questionnaire, and 2) an unstructured interview focused on perceptions of and experiences with their child’s legacy. All interviews were audio-recorded and transcribed verbatim.
Analysis
Like the open inductive approach described by Boles and colleagues [20], each transcript was coded independently, line by line, by two different members of the research team. Care was taken to ensure that transcripts were not coded by the same research team member who conducted that particular interview. Both sets of codes from all transcripts were compiled into a central document where redundant and similar codes were combined into larger categories. All transcripts were again reviewed by the research team to ensure categories were reflective of participant responses. Next, related categories were combined into three themes; transcripts were again reviewed to ensure the identified themes were as grounded in the data as possible.
Results
Three themes were identified concerning the legacy perceptions and experiences of parent participants: 1) legacies are composed of memories and experiences that have a lasting effect on others; 2) healthcare experiences both generate and participate in infants’ legacies; and 3) parents’ legacy perceptions are shaped by cultural conceptions, spiritual beliefs, and grief experiences (see Table 2 below).
Participant descriptions of perinatal and infant legacy, by theme and subtheme
Participant descriptions of perinatal and infant legacy, by theme and subtheme
Participants articulated a common understanding of legacy as a set of memories, items, and experiences with recognizable impact on other people. One mother who lost her preterm infant stated, “[legacy] means all the memories that we were able to build with him,” in his seven weeks of life. One parent described legacy as “a lasting impact, something that will always stick with you,” and another added legacy is “what the person leaves behind.” Participants also identified distinct ways in which their child’s legacy could be seen and represented.
Tangible representations of legacy
Participants described an array of tangible legacy representations like plaster hand or foot molds, baby blankets, identification bracelets, locks of hair, photos, decorative urns, and backyard gardens; all used these items to remember and feel connected with their child and their legacy. One father that lost his premature infant to a chronic condition shared, “for a year or two, I had one of his blankets folded up and I kept it in my pocket all the time.” Another parent reported that she was able to cut locks of her son’s hair before he died, which she had made into a necklace; additionally, she reported that a friend purchased a 3D print of her child’s heart to honor his legacy and rare congenital heart defect. Other creative representations of the child’s legacy included music recordings incorporating the child’s heartbeat, personalized jewelry, and wind chimes.
Many parents spoke about adopting meaningful symbols or traditions to continue engaging with and sharing their memories. After losing her three-week-old, one mother described how her child’s memory was entwined with images of the flamingos once used to decorate her nursery; now, flamingos are the primary motif of each year’s Christmas tree in her honor. Another mother spoke of how she and her husband “assigned whale stuff” to their son and often buy one another whale-related items to remember and honor him. One couple described how a hat made by their son’s grandmother became a central component of his legacy in and beyond the hospital:
When my mom had made him that duck hat it just kind of stuck. So, when we had him cremated, we put him in a stuffed duck . . . On his birthday, we buy little rubber ducks and we take them around town and hide them places . . . it was just some way for us to put his memory out there for others. Now we have a cabinet at the house where we keep all his little ducks, and you know there’s a letter ‘H’ in there and all his special books . . . We never hide the fact that we had a child and lost him. He’s always present there as well.
Several parents shared ideas for other ways to represent infants’ legacies, such as “getting copies of his medical record things, like his EKG report or something like that,” adding the child’s DNA to national databases for future siblings or family members to find, or even offering candid, unplanned photos:
One day I was holding her, one of the days that she was off the ventilator, and I was holding her and the nurse said ‘oh, give me your phone, I have to take a picture!’ And at the time, we thought, like what I thought was, ‘she’s gonna make it out, like we don’t need a picture of this moment. There are going to be a million other of these moments, you know.’ And there weren’t. So, I treasure that picture.
Overall, no singular medium of expression or representation of legacy was preferred by all participants, but each underscored the importance of choice, creativity, and connection to the child’s unique qualities and experiences as defining traits of meaningful tangible keepsakes.
Intangible representations of legacy
Participants in this study also spoke to the intangible elements of their child’s legacy. As one father stated, “I just remember him in the little things, you know,” sharing:
He was a one-week-old living in a bubble, he wasn’t thinking about playing baseball, or cutting the grass, or you know doing things that I did with my dad . . . those were the things that I wanted and was going to miss out on. And I still think about those things all the time.
For several participants, future hopes were part of their child’s legacy, even if these experiences were never actualized.
One particularly meaningful element of an infant’s legacy was their name –both in the meaning it held and the practice of speaking it. A mom shared, “I bring him up constantly;” likewise, a father who lost his twin girls reported, “we keep their memory alive by bringing up their names.” Another described the cultural legacy her child’s name holds:
She died on the 13th. December 13th is one of the biggest holidays in Sweden. It’s Santa Lucilla day, with ‘Lucilla’ being of course a version of our daughter’s name. And what we celebrate is that it’s the day that Santa Lucilla brought back the light. So, it was like this thing that had been really negative was transformed into something really meaningful; so now we celebrate her and Santa Lucilla Day also in our family.
For some, siblings were viewed as a relational vehicle of the infant’s legacy. Those born after the infant’s death were seen to embody qualities of their deceased sibling, from being “basically his splitting image . . . what he would have looked like had he been able to stay here” to the impetus behind the sibling’s conception and birth (“I do not know that I would have tried again for another baby if my first child had stayed healthy”). One family shared, “she was five when he passed away and the duck thing kind of carried on with her too.”
Finally, altruism appeared to be an essential intangible component of their infant’s legacy. Some spoke about advocating for “more testing,” being “more involved with children with special needs,” and advising hospital teams on “protocols that they should change or institute for children on ventilators.” Many parents spoke of wanting to “help someone else if we could,” and accomplished this by establishing non-profits, donating their child’s organs and tissues, participating in fundraisers, and supporting other parents traversing similar paths.
Healthcare experiences generate and participate in legacy
Many participants in this study acknowledged how their relationships and experiences in the hospital affected their memories of their infant. Specifically, they described how their child’s legacy either originated within or was inextricably connected to the hospital environment and staff. As the mother of a premature infant with a heart defect summarized, “he never left the hospital, so we feel very connected to him there.”
Participants also spoke to how relationships with care team members shaped their infant’s life experiences and legacy. Most reported feeling “very close to” their infant’s team members, and some reported being still in contact with some former providers. As one mom of premature twins shared, “I was a little sad to leave the NICU because you just love those nurses so much. One even put a card in our mailbox after [the girls] passed away.”
However, these close emotional relationships were sometimes challenging to navigate, especially when the infant began to decline or was actively dying. As one family described, “It was hard the night he started to get sick. The one girl that was there that night, she had to separate because she couldn’t do it. She had to elect someone else to come in because she was so close to him.” Participants emphasized the importance of these supportive relationships to their child’s memory, especially when they were sustained throughout their child’s illness, hospitalization, and death.
Along with supportive provider relationships, participants in this study reflected on the impact of personalized end-of-life care on their child’s legacy. The more personalized the experience appeared to be, the more these moments seemed to positively contribute to their perceptions of their child’s legacy. One mother reflected on how team members helped to recognize important milestones in her infant’s life, sharing “somebody made a big poster for her that said, ‘happy two-month birthday’ and that was really nice. That made me feel like somebody there cared about her.”
Unfortunately, some participants detailed how lack of individualized care compromised their child’s end-of-life experiences and therefore complicated their enduring legacy. As one mother reported, “We didn’t know we could hold him on the ventilator for a couple of weeks, like two weeks. No one ever told us that was a possibility . . . And no one told us that you can put up a mobile, you can kind of treat this room like your home.” Another shared, “it was just like, ‘we’ll make molds of his hands and feet.’ We were just told that would happen. No one asked if we wanted it. And they took photos after he died, but . . . he looked dead already.” Thus, participants articulated that individualized, family-centered end-of-life care factored significantly into their perceptions of their child’s memory and legacy.
Legacy perceptions are impacted by culture, spirituality, and grief
Participants in this study not only reflected on their perceptions of their infant’s legacy, but also shared insights into how their legacy and grief experiences were shaped by cultural discourse and personal spirituality. Interestingly, a unifying cultural belief shared across participants was the assumption that legacies are typically attributed to those who have lived a long and full life, rather than infants or children still early in the life course. A father noted this tension when reflecting on his twin daughters’ legacies, stating “they weren’t here very long, so it might be different for someone who had a child with them, you know, for a longer period than we did.” Another participant reflected, “prior to this, I more thought of legacy in terms of like people who have lived a long time who leave lots of people, lots of work, or lots of other accomplishments behind.”
Challenging this dominant social association of quantity of life with quantity of legacy, participants in this study asserted that their children’s legacies were valuable, nonetheless. One mother succinctly summarized her son’s legacy with, “he only lived 45 days. But he did big things in those 45 days.” Each participant reflected on the roles they inherited since their loss as enduring carriers of their infant’s legacy –a role that was both fulfilling and devastating at the same time. As one mother shared, “It makes me feel sad that that’s all I can do for her, just to try to make sure that she’s remembered. And that that’s a job for a mom when it should be the job for the child when I’m gone.” Although painful at times, the majority of participants attributed these cultural assumptions about legacy to be motivating factors both in their personal grief and their child’s lasting legacy.
Spirituality
Several participants described how their religious and spiritual frameworks, or lack thereof, affected their legacy perceptions and grief experiences. Some approached their loss with steadfast religious beliefs reinforced through their child’s death:
You know he passed away and I believe it’s just part of God’s plan . . . We just know that we are going to see him again and we all find comfort in that. It’s made us stronger in our faith . . . there’s not life without death, and to God, I believe that time doesn’t mean anything . . . Hopefully heaven is just a moment to our son until we get to see him.
Others found their faith frameworks challenged by the experience of loss. One father described an emotional encounter with his pastor, in which he posed the question of why this happened to his family: “ . . . the preacher simply said, ‘who are you for this not to happen to?’ And that really helped me a lot. These are things that we can’t understand.”
Some participants described their spiritual lives and practices as coping mechanisms throughout their grief experience. One mother detailed prayer as a way of both coping with her own loss and extending her support to other parents navigating similar pain, sharing “I totally believe my faith in God is what brought me through . . . I’ve seen other women there [at the cemetery] that lost babies, and I have been praying for them. Every time I go out there, I pray for all the families that lost their babies.” Additionally, a mother spoke about finding solace in her faith both for herself and her daughter. She described a sense of peace she associated with her beliefs about the afterlife, sharing “there’s no time in heaven. So, when they get there, they meet Jesus, and you are already there. We’re already there. I’m already with her. She’s not alone. And that gives me great peace to know she is not alone.”
Grief
All participants discussed searching for a sense of purpose or meaning to attribute to the death of their infant. Some described meaning in how the experience of love and loss spurred internal change; for example, one mother who lost her infant at two days of age simply stated, “she gave me the strength to do things I didn’t think I could do.” Other participants found instrumental and direct meaning in their infant’s death as an event that affected family structure and functioning: “our adopted daughter is –probably the only reason we took her –is because of his death and I believe that, um, that’s what he was put on this earth for.” Some even described the deep impact their infant’s loss had on others in the community:
A friend of mine told me after [the girls] passed away, she said, ‘I want you to know they changed my life, like they meant something.’ After that happened, she gave me this necklace with these angel wings and said, ‘I realized I wasn’t happy with what I was doing in my life, and my job. I decided to quit my job and do something I love and it was because of them. Life’s so short and I want you to know that they meant something.’
Thus, each participant identified specific ways in which their child’s life and death had achieved their perceived purpose of having a lasting, positive effect on others.
Several participants also spoke to how they planned to extend the meaning of their child’s life, their purpose, through service to others enduring stress or loss. One mother shared, “I just want her life to have meaning and for her death to be for something . . . I want something good to come from something so bad. When we first started it was about sharing our journey and helping other people and giving her life meaning so she’s not forgotten.”
Social support
All ten participants spoke about how their social networks shaped their experience of their infant’s death and legacy. Unfortunately, some found the support offered by family and friends to be less than helpful, sharing “I had more hurtful things said than good, so I kind of just had to tune out a lot of things. That’s why afterwards I couldn’t really be around a whole lot of people.” Some even felt rushed through their grief process by well-intending support networks, because “they want to see you over it, you know, and um this is something you don’t ever really –you never get over it . . . What I’ve learned is not to try to get over it, so I’m just gonna keep those memories.” Additionally, some participants spoke to the ways in which their recognition of and efforts to propagate their infant’s legacy became a form of social support in itself. One mother reported, “I think building the legacy part helps with the healing of yourself too, because you’re putting your energy and your sadness into something good and you’re transforming the way you feel inside through your outward acts.”
Discussion
As described previously [3, 16], participants in this study conceptualized legacy as a constellation of memories and experiences that endures after death. Although tangible items frequently involved in hospital-based interventions [3, 15] were discussed, participants also highlighted intangible, relational elements such as specific memories and altruism. These insights indicate that legacy, especially in pediatric healthcare settings, may be more expansive than it is currently practiced.
Notably, participants emphasized how their infants’ shortened lifespans did not minimize their enduring legacy. In fact, this gave participants an impetus to remember and honor their infants’ legacy in life after loss, whether through changes in perspective, philanthropy, or the presence of living siblings. Through this lens, legacy-building interventions can serve as a catalyst for, but not the only means to, meaning-making, social support, and adaptive coping in perinatal or infant loss.
Consistent with previous research [7, 21], participants articulated that many of their infant legacy experiences originated within the hospital walls. As a result, interactions with the hospital environment and clinicians on the care team generated and responded to infants’ legacies. Open and supportive communication with the team, shared grief expressions with clinicians, and personalized end-of-life experiences formed and continued the infant’s legacy by humanizing and respecting their unique personhood [3, 12]. By fostering relationships with families, celebrating milestones, and personalizing end-of-life experiences, healthcare providers can honor an infant’s legacy prior to and in the aftermath of loss.
In addition to healthcare encounters, study participants’ perspectives on their infants’ legacies were shaped by cultural backgrounds, spiritual beliefs, and grief experiences. Many bereaved parents called upon faith frameworks as avenues for meaning making and coping. Furthermore, many parents described their infant’s lasting impact on themselves and others as an embodiment of their child’s legacy. Such sentiments affirm the value of individualized grief and social support in promoting healthy coping and meaning making after the death of a child [12].
Although extremely meaningful, these results are limited by the self-selective nature of this study and resulting demographic homogeneity of the sample. Additionally, they were drawn from a limited geographic area served by the site. Given the integral role of cultural conceptions and spiritual beliefs in shaping bereaved parent participants’ definitions of legacy, more diverse study samples are needed.
Despite these limitations, the present study not only illuminates parent/caregiver perceptions of legacy in the context of perinatal loss, but also contributes additional insights to how they may measure and describe the quality of their end-of-life care experience. As participants clearly articulated, effective communication from and supportive relationships with providers greatly impacts their experiences of hospitalization and loss, as does the extent to which care was individualized to their infant and family’s needs [7, 12]. Additionally, just as legacy perceptions appear to be impacted by spirituality, culture, and individual grief needs, so too do these serve as either protective or risk factors in the development of PCBD [9–11].
The results of this study, and their intersections with current research on legacy across stakeholder groups as well as literature on the bereavement experiences and outcomes for bereaved parents necessitate improvements at every level of neonatal and perinatal care. First, education and training about legacy as a healthcare construct, and the grief and legacy needs of families experiencing infant or perinatal loss, is needed for medical and psychosocial staff intending to serve this population. Such education should not only be didactic, but also incorporate experiential elements like simulation exercises or engagement with bereaved parent advisors for optimal effectiveness. In the clinical realm, assessment of legacy perceptions, needs, and preferences should be incorporated into both standardized workflows and documentation practices to ensure that legacy-building interventions are equitably accessible –yet also able to be customized to the individual child and family. Additionally, time and space should be made for conversations about and interventions that honor the child’s legacy for the family, whether these need to happen at the time of miscarriage, post-operatively, prior to or at time of death, and in settings such as the maternal/fetal medicine clinic, or the labor and delivery or neonatal intensive care units. The next line of legacy research should specifically employ experimental and quasi-experimental designs to evaluate the potential impacts of legacy interventions on bereaved parent coping, adjustment, and relationships to the development of PCBD.
Bereaved parent participants expressed their infants’ legacies in ways that both aligned with and expanded upon current understandings of legacy needs and practices in pediatric hospital settings. Further research is needed to better comprehend how the legacy experiences of parents enduring the loss of an infant intersect with health professionals’ understanding of legacy and the outcomes achieved by clinical legacy interventions as currently practiced. By exploring the distinct ways in which bereaved parents conceptualize their infants’ legacies, providers can attend to families’ preferences and offer tailored interventions that foster adaptive coping and meaning making during and after perinatal or early infant loss.
Footnotes
Acknowledgments
The authors would like to extend their deepest gratitude to the families who shared their experiences, perceptions, and feelings to inform this study. May they know their children’s legacies endure in these pages, impacting others for generations to come.
Financial support
No funding was received for any part of this research.
Financial disclosure statement
The authors have no conflicts of interests or conflicting financial interests to disclose.
Human research statement
This study received ethics approval from the Institutional Review Board at Vanderbilt University Medical Center (protocol number 191997) after undergoing expedited review. Full, informed consent was provided by and documented for each participant.