Bereaved mothers’ and fathers’ perceptions of a legacy intervention for parents of infants in the NICU

1 Introduction

Expert care for seriously-ill or premature infants has been provided in neonatal intensive care units (NICUs) since the 1960s. Approximately 12% of the four million babies born in the U.S. each year are cared for in the NICU. Of these, 11% are born premature, and 1% have significant illnesses that require NICU care [1]. NICU care may be supportive, palliative, or surgical and is lifesaving for many infants. On the other hand, neonatal death is an unfortunate reality within the NICU. Neonatal death is classified as death within the first twenty-eight days of life, and is most commonly caused by premature birth, low birth weight, and birth defects. In 2015, the United States had a neonatal mortality rate of four per every 1000 live births. With an estimated four million births per year, approximately 16,000 babies died in the NICU during 2015 [2].

Although bereaved parents can experience positive growth, they are high risk for significant negative consequences such as marital disruptions [3], psychopathology [4], and mortality [5]. Having an infant in the NICU often requires large amounts of time spent at the hospital and many decisions involving the care of the infant as well as siblings [6]. The NICU environment is foreign and intimidating and can be tremendously frightening to parents. Grieving parents may experience physical and emotional symptoms including fatigue, insomnia, aches, chest pain, nausea, shortness of breath, anxiety, and panic attacks [3, 6]. Emotional symptoms (e.g., sadness, helplessness, guilt, anger) may occur as bereaved individuals move through the stages of grieving including denial, anger, bargaining, depression, and acceptance. Grief can also create a source of toxic stress that can have damaging effects on one’s immune system [7]. The death of a child is not only significant in the present, but it also symbolizes the loss of a future for families [8].

Growing research has examined bereavement programs in the NICU, needs of bereaved parents, perspectives and needs of siblings, and nurses’ understanding and perceptions of bereavement services in the NICU [9–13]. Studies have noted the importance of physical representations of deceased infants, supporting the need for bereavement programs that enable families to create and collect physical representations of their children. Parents have emphasized that it was important to “receive mementos such as photographs, handprints, footprints, casts, or clothes” [11].

Legacy-making, defined as memory making, or doing and saying things to be remembered [14], may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. Previous work suggests that legacy-making activities may be important and helpful for terminally-ill adults [15] and bereaved parents and siblings who experienced the death of a child from cancer [14]. However, studies exploring legacy-making with samples of bereaved parents who experienced the death of an infant cared for in the NICU have not been conducted. While legacy interventions have been developed and found feasible for adults and children living with cancer [14–19], such interventions have not been developed or tested in populations of bereaved NICU parents. The overall purpose of this study was to explore bereaved parents’ perceptions of a legacy-making intervention for parents after the death of an infant.

2 Methods

2.2 Procedures and measures

The principal investigator (PI) collaborated with the physician division director of the NICU to develop study procedures. Institutional Review Board approval was obtained prior to beginning study recruitment. The PI obtained a list of the names of deceased infants by contacting the palliative care nurse who manages the NICU database. Eligible participants were (a) bereaved parents (legal guardians 18 years of age and up) of infants who received care or died in the NICU, (b) between 3 to 12 months after the death of their infant, and (c) able to speak and understand English.

The PI determined families who likely met the inclusion criteria based on dates of infant deaths, discussions with the medical team, and review of medical records. The PI prepared participant introductory letters to be reviewed and signed by the attending physician or NICU department head; this served as a screening process for physicians who worked with the families to screen out any families they felt would not be good candidates for the study. Physicians screened out two eligible families in this study. The PI mailed letters to families that were signed by physicians. The letters included an opt-out number/email for families who wish not to be contacted further, although no families opted out. The PI called families two weeks after letters were mailed to describe the study in further detail, answer any questions, and determine parents’ interest to participate. New participants were invited until six parents agreed to attend, with the goal to have six to eight participants based on Krueger’s focus group techniques [20]. To increase participation, participants received a reminder phone call, text, or email one to two days prior to the focus group. (Fig. 1. Recruitment process).

After all focus group participants arrived, the PI (experienced in conducting and consenting bereaved parents for research) explained the study and consent materials and answered questions. After verbal and written consent, participants individually completed a demographic questionnaire that included the parent caregiver’s gender, age, race, marital status, educational level, and deceased child’s date of birth (month and year only) and date of death (month and year only). The PI began the group interview by asking an ice-breaker question to decrease potential participant anxiety. Next, the PI presented the intervention idea to participants by describing and showing video examples of digital stories created from previous work in pediatric oncology [19]. The PI then used a semi-structured interview guide with open-ended questions to obtain self-reports from the bereaved parents regarding their suggestions for developing the intervention content, their acceptability of the intervention, and their willingness to participate in such an intervention. The focus group lasted approximately 60 minutes and was conducted using Krueger’s focus group techniques [20]. The focus group interview was conducted in a private living room style conference room at a school of nursing. The interview was audiotaped and later transcribed.

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Fig.1

Recruitment process.

3 Results

Four major themes emerged regarding participants’ perceptions of a legacy intervention: (a) parents’ willingness to participate in a legacy intervention, (b) parents’ suggestions for a feasible intervention, (c) parents’ suggestions for an acceptable intervention, and (d) parents’ perceived benefits of legacy-making. Descriptions and exemplar quotes will be presented for each theme.

4 Discussion

This qualitative study is the first to explore bereaved parents’ perspectives of legacy-making intervention in the neonatal intensive care unit. Through our qualitative analysis, we effectively explored the feasibility and acceptability of a legacy-making intervention for parents of infants in the NICU. All participants agreed that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Participant reports supported the need and desire for legacy-making services to be offered in the NICU.

Parents suggested that one potential outcome of legacy-making included continuing bonds with their deceased infants. The continuing bonds theory suggests that maintaining connections with the deceased can help facilitate coping and provide comfort to bereaved individuals [21]. Continuing bonds has been shown to be expressed in various ways, such as keeping physical representations (e.g., photographs, videos) of the deceased and thinking about the deceased, and can result in comforting and discomforting effects [22]. While legacy-making has been studied in pediatric and adult patients with advanced illnesses and their family members [14–19], the impact of legacy-making in bereaved parents of infants who died in the NICU remains unexplored. Continuing bonds is an important outcome to consider for legacy-making in bereaved populations.

Participants reported that the inclusion of pictures and videos of their child would be desired because it allows for a keepsake that can facilitate continued bonding with their child after death. A recent study found that “being a parent” and “being there for my child” is very important for NICU parents, even if their child’s life is very brief [23]. The current study not only supports this finding but extends it beyond the immediate bereavement period, suggesting that continued attention and feelings of closeness with the deceased child are important in maintain the feeling of being a parent, which may help with feelings of grief.

Participant reports also suggested that digital storytelling could enhance coping strategies for family members of deceased infants. Similarly, studies have shown that storytelling is an effective intervention to promote coping in surrogate decision makers for patients who have died in the intensive care unit [24, 25]. Narrative theory suggests that storytelling and other narrative-based interventions reduce distress from traumatic events and through emotional disclosure, cognitive processing, and social connection [26]. Future work is needed to further examine how legacy-making via storytelling could impact coping for bereaved parents and family members following the death of an infant.

In addition to some of the benefits digital storytelling could have for bereaved parents in the NICU, participants identified some potential barriers to its implementation, including timing of approaching parents in the NICU, sensitivity to the potential uncertainty of prognosis for infants in the NICU, and logistics of collecting photos and videos. Participants suggested making inclusion criteria as inclusive as possible, approaching parents as early as possible, and presenting the intervention to parents as a positive and productive activity that has been shown to help previous NICU parents in similar situations. Participants identified nurses as being in ideal roles to help facilitate the intervention process (e.g., taking photographs, etc.).

Participants stressed that an acceptable intervention would need to allow parents to remain focused on their child. Similarly, Hinds et al., [27] found that parents of children with cancer have defined being a good parent as including being at their child’s side and showing the child that he or she is cherished. Regardless if the intervention format developed and offered to parents is web-based or face-to-face, the important element for a feasible and acceptable intervention is that it must allow parents to remain in their “good parent” role. Pilot studies are now needed to develop and test feasibility of digital storytelling methods that may be best suited for bereaved NICU populations.

It is interesting to note that parents reported they would be willing to share their infants’ digital stories with others, including other parents and families in the NICU. Parents seemed willing to participate not only for their own benefit but also for others. This altruistic nature of bereaved parents is similar to the altruism previously described as a form of coping in clinical trial participation [28], perhaps by promoting meaning-making related to traumatic events [29, 30]. Moreover, digital storytelling could offer a way for parents to share their infant’s story with other family members who may not be allowed in the NICU or have opportunity to come to the NICU, such as siblings, grandparents, or friends and loved ones that live far away.

We acknowledge that the sample size is extremely modest, and thus, generalizability of results are quite limited. Generalizability of results are limited to parents who experienced the death of an infant who was treated or died in the NICU. Thus, the idea of a legacy intervention may not be feasible or acceptable to bereaved individuals who have experienced other types of loss. Despite these limitations, this study demonstrated feasibility and acceptability of legacy-making for bereaved parents who experienced the death of an infant.

Implications for practice include the potential for legacy-making in the NICU to improve relationships and communication between parents and the medical team. Nurses and physicians are often involved in the making of memorabilia hand and footprints for parents to take home [18]. A digital legacy-making tool that is created over the course of a baby’s hospital stay has the ability to improve parent-nurse and parent-physician dynamics and overall improve parent communication and satisfaction. Future studies should include the design of a conceptual framework that would include the relational impact of the parent, additional family members, and medical team through this novel legacy-making intervention. Primary outcomes for future studies could include parent coping, continuing bonds, satisfaction, anxiety, decisional conflict, and additional markers of quality. Research is now needed to develop a NICU-specific legacy intervention and examine preliminary efficacy of parent outcomes.

In summary, legacy-making is a unique tool that could benefit parents of infants in the NICU. Narratives are key to looking beyond the superficial facts or clinical context and critical to opening a ‘space’ to discuss deeper values and moral concerns [31]. Legacy-making interventions, including narratives, may allow opportunities to explore moral dynamics (the individual and collective processes by which moral behavior and moral attitudes emerge, evolve, spread, and disappear) in the context of the NICU, and potentially improve communication, decision-making, and family-centered care and healing.

Funding

The authors have no funding support or conflicts of interest to disclose.