Parental Perceptions of Neonatal Therapeutic Hypothermia; Emotional and Healing Experiences

Abstract

Introduction:

Parents of infants who undergo therapeutic hypothermia experience emotional challenges that have not been fully characterized. Comprehensive understanding of the parental experience of hypothermia is needed to provide better care to the family of the infant. This study aimed to improve the understanding of the parental emotional experience of therapeutic hypothermia in the Neonatal Intensive Care Unit (NICU).

Methods:

Semi-structured interviews were conducted in a group setting with parents matched into groups according to the severity of the infant’s presenting encephalopathy. The interviews were transcribed and coded into principal and additional sub-themes.

Results:

Families of 15 infants, who were between 2 months and 2 years at the time of the interview, participated. Infants had a mean gestational age of 40.0 weeks and 11 (73%) were male. Eleven (73%) were transferred from other hospitals following birth and 8 (53%) had seizures. Emotional Experiences was a principal theme and included subthemes of Traumatic experiences, Loss of normalcy, and Separation of parent and infant. The birth was frequently described as traumatic with descriptions of chest compressions, excessive blood loss and infants not crying. Trauma was also described in the parental observations of the shivering hypothermic infant. Parents highlighted the loss of normalcy in terms of their expected birth narrative and the loss of the early opportunity to breast feed and hold their infant. Parents reported that the physical separation imposed by hypothermia adversely impacted their ability to bond with their infant.

Healing Experiences was the other principal theme with subthemes identified as Incorporation of parents into NICU care, Reclaiming parenthood and Support from other hypothermia families. Parents reported feeling a connection to their infant when they were involved in medical rounds and when asked to participate in routine care of their infant. Occasionally, parents strongly advocated for their own participation in a particular aspect of their infant’s care such as a diaper change and this was perceived as reinforcing their role as parent. Lastly, parents requested greater access to peer support from parents who had experienced therapeutic hypothermia.

Conclusion:

Parents of infants treated with hypothermia reported the experience of their unexpected adverse delivery and their baby subsequently being treated with therapeutic hypothermia as traumatic. This trauma can be compounded by the pale, still and shivering appearance of their newborn and the delay in bonding as a result of physical separation during hypothermia treatment. Parents described feeling connected to their infant in the context of performing routine care activities and desired greater access to peer support. The themes reported in this study could be used to inform high level NICU care and raise provider awareness of the parent experience.

Introduction:

Therapeutic hypothermia has become the standard of care for infants at high risk of morbidity and mortality due to neonatal encephalopathy. Infants with previously poor prognoses are now more likely to have improved survival rates and the potential for positive long term developmental outcomes.¹ However, enduring positive effects rely on more than just successful medical treatment of an infant. The influence of the parent-child dyad and overall family resiliency on the trajectory of critically ill infants has also been well established.^2,3,4,5 An adaptive family system is essential for a child’s physical, cognitive, social, and emotional development.⁵ Families that can persevere in the face of stress are better equipped to meet complex medical needs.

Within the Neonatal Intensive Care Unit (NICU) setting, a family-centered approach to promote resilience has increasingly been shown as the ideal standard of care.⁶ However, to be effective, it must adequately target the specific needs of a family. Therapeutic hypothermia presents challenges to parents that are distinct from those that all families are exposed to during a NICU admission.^7,8,9 In a previous study, we published the experience of NICU nurses caring for families of infants treated with therapeutic hypothermia in which observations were made of the challenges unique to parents of hypothermic infants, such as the restrictions placed on physical contact.¹⁰ We have also published work on communication challenges experienced by parents of infants treated with hypothermia and on their expectations of the care delivered in the NICU.^11,12 In this manuscript, we aim to characterize the emotional experiences of parents of infants undergoing therapeutic hypothermia with the future goal of delivering better informed family-centered care.

Methods:

This was a qualitative study on the parents of infants treated with therapeutic hypothermia in a 51-bed Level III NICU at a single tertiary care center in the Northeastern United States. Comprehensive details of the methods and the full semi-structured interview questions have been previously published^11,12 The sample consisted of parents of infants born between 2013 and 2015 and those who opted to participate in focus groups were matched based on the severity of the presenting neonatal encephalopathy according to Sarnat criteria¹³. Parents were excluded if they were non-English speaking, if their infant died, if they had moved more than 100 miles from the hospital and if the infant was adopted. Informed consent was obtained from all participants and the study was approved by the local institutional review board. Interviews occurred in a group setting with the parents of 3 children present at each session and employed an open-ended question approach. A sample of the questions present in the semi-structured interview is as follows:

• Please tell us about your experience in the NICU.

• Tell us about what you were told before you baby was cooled. Was this different from what actually happened?

• What do you wish you would have known before cooling?

The interviews were recorded and transcribed verbatim. Characteristics about the clinical course of the infants were extracted from the electronic medical record manually by a trained research coordinator. Descriptive statistics of quantitative data for Table 1 were generated using R software¹⁴. Qualitative analysis was performed using an inductive approach in which investigators read the transcripts, met to jointly develop predominant themes, followed by the development of sub-themes within the principal themes.

Table 1:

Maternal and infant characteristics

	Characteristic	N=15
MATERNAL	Prima gravida, N (%)	8 (53%)
	Mean Maternal Age in years (SD)	29 (5.7)
	Number delivered by C-section, N (%)	7 (47%)
INFANT	Mean Gestational Age in weeks (SD)	40.0 (1.3)
	Mean Birthweight in kg (SD)	3.70 (0.6)
	Male, N (%)	11 (73%)
	Mean 1 minute Apgar	1.3
	Mean 5 minute Apgar	3.7
	Mean 10 minute Apgar*	5.2*
	Transferred from outside hospital, N (%)	11 (73%)
	Number intubated, N (%)	11 (73%)
	Number with seizures, N (%)	8 (53%)
	Abnormal MRI anticipated to effect motor outcome, N (%)	4 (27%)
	NOT orally feeding at discharge, N (%)	2 (13%)
	Mean Length of Stay in days (SD)	12.3 (5.5)
	Normal neurological exam 12 months, N (%)	13 (87%)

^*N=14 for 10 minute Apgar score

Results:

There were 53 infants who were assessed for eligibility for the study. Eleven infants were excluded; five due to death, two due to non-English language, two due to moving to a different state and two as a result of adoption. Parents of fifteen infants (35.7%) who met inclusion criteria participated in one of five focus groups. In total, 30 adults were interviewed, including 15 mothers, 12 fathers, 2 grandmothers and 1 grandfather. Grandparents were included in the interviews only when the father was not involved and when the grandparent was in the NICU. Individual participants were not identified in the transcript by name or by relationship to the infant and therefore unless their role was explicitly stated, the specific responses of grandparents are not separated from all the other parental responses. Table 1 highlights maternal and infant clinical characteristics including an average length of stay of 12 days. At the time of the interviews, the infants were between 2 months and 2 years old.

Two of the four principal themes, Emotional Experiences and Healing Experiences are discussed in this manuscript. Subthemes of Emotional Experiences include Trauma, Loss of normalcy and Separation of parent and infant. Subthemes for Healing Experiences include Incorporation of parents into NICU care, Reclaiming parenthood and Other hypothermia families. Parental expectations¹² and communication¹¹ in the NICU were the other two principal themes discussed with associated subthemes in separate manuscripts.

Principal Theme: Emotional Experiences (Table 2)

Table 2:

Quotes illustrating parental experience of trauma infant shivering and loss of normalcy

Theme	Quote
Trauma	“For me, I had a cesarean and I was kind of like out of it when he was born and it was so like traumatic but he pretty much knew what was going on. For me, the experience of like regaining consciousness; some kind of state of mind and saying, well you can’t see your son for x amount of hours because they’re hooking him up right now for a 72 hour process that’s going to cool him you know and keep him cold and I guess that for me was kind of like traumatic.” “I was traumatized by the experience for a long time after” “That would have been a great time to have some kind of professional resource to say you know you’re going through this trauma, you know I can help, can we just sit down and chat for a minute.” “the doctor is pulling and the nurse is on my stomach, I’m pushing; finally the baby’s out and just a flood of people came in and took her away and I’m looking at him and we just had no idea what was going on. So in the process of her being born, her arm was broken and she had low Apgar score” ““[baby name] was not responsive; he was resuscitated with chest compressions”.
Shivering	“She was shivering and she was crying.” “That’s a lot to go through in that amount of time watching him shiver and shake.” “I mean it was awful to see him shiver and feel him cold.” “We saw her shiver; she was shivering and she was crying, she was whining a little bit.” “Your 3 day old child is being ….. frozen to death.”
Loss of Normalcy	“We went in thinking everything was okay.” “She went into labor and we thought we were going to have the perfect baby.” “I really wanted to do breast feeding but they said to get him out of there sooner, they’d like to know how much he was eating and he had to take like 210 milliliters a day.” “you’re grieving not having that natural connection” “I tried not to put myself into it and be attached at first. Even though it was my own child.” “And I just kept, towards the end I just kept asking, can I hold him, can I hold him.” “Because at the time when they talked to me, all I could think about was, am I going to be able to hold him; what’s going on; when am I going to see him? Because they did, all I was told is the doctor came in, said, I said, am I allowed to hold him; can I go see him?… And then she was gone and that was it” “And when we finally got to hold him, he still had so many things attached…” “And you know we would sit there all day and hold his hand and I feel like we, sometimes I think that they [RN’s] got kind of annoyed” “So it was hard. I mean we knew it was going to be 72 hours on the cooling mat but we didn’t realize at first that we really couldn’t; we just didn’t realize we couldn’t hold him or touch him.”

Trauma subtheme:

This theme incorporated the parental experience of trauma surrounding the delivery and resuscitation of the infant and trauma associated with the appearance of the infant during hypothermia treatment. The birth scene was described by one parent as “… like a murder scene, there was blood on the ceiling and blood all over the doctor’s face”. Another parent described the trauma of the resuscitation “But when he came out [he was] not breathing, gray…They had to [give him] chest compressions and give him oxygen in order to revive him. One of the chest compressions collapsed a lung…” Witnessing what one parent referred to as “controlled chaos” made a lasting impression. “there’s no baby crying so I just said to my husband, I said, I don’t hear him crying. And …he was watching the chest compressions, which is an image he says he cannot get out of his mind”. One father was able to verbalize lingering experiences such as nightmares and intrusive thoughts that he identified as post-traumatic stress disorder, “we experienced a very huge trauma in that day…I was solely focused on the two of them [mother and infant], but a support to treating the trauma for me would have gone a long way, because 3 months later it’s hard. It’s PTSD.” While his wife was able to get care for her post-partum depression, there was no clear framework for his mental health needs to be identified and treated. Another parent commented on a persisting fear for the survival of the infant, “When he’s sleeping so soundly you have to touch the chest and still really can’t feel the heave. Still recovering from the trauma”.

For many parents, trauma from the birth and resuscitation was compounded by witnessing the physical effects of the hypothermia treatment on the infant including skin pallor and shivering. Shivering was perceived by parents as a physical sign of their infant’s discomfort, “And he was shivering most of the time so I think during that time I was constantly just like hurting for him because I don’t think he was comfortable” and “That’s pretty traumatic even as a parent because you’re having to sit there and watch your poor child shiver; you know not be able to stop shivering”. Many parents commented on the strong desire to hold their shivering infant and the emotional distress they experienced from not being allowed to hold during hypothermia treatment; “he was just shaking and shaking… and that was really hard just seeing him shaking and not being able to; you just want to hold him and warm him up.” Other families noted the blue or gray appearance of the infant, with comments such as “I could see…. him just shivering and gray” and “[baby name] was blue/gray.”

Loss of normalcy subtheme:

This theme incorporated parental experiences that described the dramatic and unexpected changes in their birth plan and the loss of the opportunity to have skin-to skin contact and breastfeed. Parents expressed beliefs that they had reached a stage in the pregnancy where they were protected from negative outcomes, “We thought that we were going to be having like a totally normal birth.” These families reflected on the impact of how their perinatal narrative changed; “You know all of us were in the same mindset that our babies were going to be perfect and they’d come out crying and none of them did.” One parent reported feeling unprepared for an outcome such as hypothermia, “[I] didn’t draw up a plan for this one; I didn’t have a contingency plan that included this as an option.” Another parent highlighted a sense of powerlessness felt during hypothermia treatment “…you just instinctively naturally as parents… want to protect your child and want to nurture them and comfort them and when you can’t do that, you feel crippled.” Another parent highlighted a perceived difference between being a parent, a decision maker in a legal context, compared to being a mother in a nurturing context; “So it was a while for me until I really felt like I was someone’s mom. I felt like a parent but I didn’t feel like a mom”.

Throughout pregnancy, parents had been prepared for the benefits of skin-to-skin contact and breastfeeding. “I wanted to hold him; I wanted to pick him up. I had this whole skin to skin plan and I had this whole breastfeeding plan and I had this whole regular natural birth plan …” Parents lamented the loss of this expected experience, “I think it was just that I couldn’t touch him like you know; I just wanted him in my arms”. Another parent reported, “I wanted to exclusively breastfeed and that didn’t work out between being separated, probably stress, probably who knows what so they had to have the conversation with me about supplementing with formula which I didn’t take so well at first.” Some parents had strong reactions to posters in the post-partum area that emphasized the importance of skin-to-skin care. The posters painfully highlighted their experience of not being allowed to do what they considered normal and hold their infant, “I wanted to rip that poster off the wall.” For many, the inability to hold the infant during hypothermia was perceived as a barrier to bonding. “…So you have it in your head that this is my child, but I don’t think I felt that….then we had a very different experience with holding him… I don’t think I felt a bond with him for quite a while”. One parent expressed the fear that the infant would die without being held, “If he dies, we’ve never even held him. It’s not reality yet because you haven’t held him” and “I mean you feel like a helpless mother, but when you do get to hold them, it all becomes real” emphasizing the importance of holding an infant as a time in which the bond between parent and child is formed and solidified. One parent, described the challenge of not knowing when it was permissible to hold and touch the baby after hypothermia was complete, “I think for me, what was even more challenging was knowing when it was okay to start touching him. You know he’s in this state and he’s so fragile and you’re so kind of protective and there was never really a moment where it was like, oh you’re okay to touch him. And so I feel like I was really hands off for probably longer than need be.” Another parent confessed to sneaking moments of physical connection with the infant, “I kind of put my finger in his hand and just wrapped his little fingers around it and once in a while I’d sneak in my hand and kind of pet his head and I wasn’t supposed to but I would; I couldn’t help it. I wanted to touch my baby.”

Separation of parent and infant:

Families expressed disappointment in separation during ambulance transport from the outside hospital. These physical separations were frequently perceived as barriers to bonding. In some instances the immediacy of need for infant transport precluded any meaningful physical contact “We didn’t get to hold him or anything but I think the hardest part for me transitioning was you know like you have no idea what’s going on; you have no idea what to expect and strangers are taking your son away in an ambulance and you know mommy or daddy wasn’t there….” Parents of transported infants consistently reported surprise, frustration and even anger that the transport ambulance would not accommodate a parent as a passenger. “Riding in the ambulance, one of us should’ve been there” and “I was just shocked I wasn’t going to be able to go.” Mothers who delivered at outside hospitals experienced delays in seeing their infant as a result of their own transport requirements, “We were transported here from another hospital …it’s tough to kind of walk in there and not know and see everything that’s going on …I got here at what, 1:00 o’clock in the morning so…I didn’t get to see him [baby] until the following day.”

Principal Theme Healing Experiences:

Incorporation of parents into NICU Care subtheme:

The importance of medical staff incorporating the parents into routine care of the infant was emphasized as a way to ameliorate the lack of control parents experienced in a highly medicalized setting. “I can’t say enough that the rounds really made us feel like we had a better sense of what was going on and you knowledge is a little bit of power so that helped a lot to not just feel like we were drifting around not having any clue.” Parents appreciated when rounds employed language accessible to them, “…it was awesome because they really broke it down into layman’s terms for us… which made us feel not only connected to her but connected to what was going on.” Parents also valued opportunities to do “normal” parent activities, such as pumping, breast or bottle feedings and diaper changes, and emphasized the importance of consistency between staff so they “didn’t have to start fresh again.” Their roles evolved from initial anxiety about the fragility of their infant to becoming an active advocate in the care, “you know they started showing us how to unplug stuff and move things around so we could be the parents”. Parent appreciated nursing staff encouraging them to be with the infant as much as was possible “those 2 people [RN’s] made me feel very welcome. They stressed any time day or night he’s[baby] yours, come visit, come spend time if you’re feeling up; you know they really, really, really made me feel, my husband and I both, very welcome and never hesitant to go to visit the baby”. The importance of recognizing both parents as equally important was noted. “The only other suggestion was to think about the male or the partner or the spouse, the other parent…I think it took a lot out of my husband and there were times when everybody just kept saying…mom get ready to hold him, mom, mom, mom to the point he kind of felt; he didn’t say it but I think at one point he probably felt like where is my part and….my husband didn’t get a chance to [hold] and then he kind of just shut himself down.”

Reclaiming parenthood subtheme:

Parents reported positive experiences on the occasions when they asserted their convictions about how to best care for their infant. “Basically I told the nurses I’m not having this; like you need to take it [feeding tube] out. I will feed him; I will be here all the time to make sure that he’s eating and you know this, you’re not feeding him via the tube anymore. And she [RN] went and spoke with the doctor and they took it out. So I was really happy about that”. This type of experience was typically regarded as a healing experience in which a parent strongly advocated for something she or he felt was right for the infant. Another parent reported advocating for her son to not be treated with morphine for a low oxygen saturation “[the] nurse wanted to give him more morphine to calm him down and all we needed to do was switch the indicator [oxygen saturation] from one foot to the other and then it was fine…and I told the oxygen guy who came in …I said, I think we just need to switch feet…”. Some parents asserted their role through participation in activities like diaper changes, “the nurse…had been talking about needing to change his diaper, that it was the time and I was sitting there and I turned to him; like, that’s my job; I want to change the diaper…and it was the first time that I was able to do it and I just felt this huge you know relief. I mean it was just like, it’s my job” and “to change a diaper…no I don’t want her [RN] doing it; it’s supposed to be my job.” Becoming an advocate for their infants was their opportunity to feel “like a real parent,” but for some families this was in the context of conflict with the medical team. “I get survival and preventing brain damage, but just remembering that you’re still the child’s mother.”

Other hypothermia families subtheme:

Improved peer support was identified as a missing element in the care of families of infants treated with hypothermia. Parents reported that connection to others with similar lived experience would have been helpful “hearing from someone …from a parent who’s been through it as opposed to a doctor; no matter how great the doctor is, if they’ve never experienced it…” One parent suggested a social media option for bringing families together “You know start the [social media] page now… with testimonies or videos… families of therapeutic hypothermia”. Parents of infants treated with hypothermia often felt outside of the typical NICU family profile, and therefore isolated even prior to discharge; “NICU is focused on preemies you know it’s a little bit isolating” and “We’re in the NICU… every room was full and there are so many people that are the best persons equipped to talk to you about what you’re going through because they’re doing it too but you walk around afraid to make eye contact.”

Discussion:

This study highlights the emotional experiences of parents of infants treated with therapeutic hypothermia. Parents described the trauma they witnessed at birth and during the resuscitation of the infant. They also described distress related to their perception of infant discomfort and shivering during hypothermia treatment. The detailed descriptions of the blue/gray and shivering infant are specific to the hypothermia treatment. Only two prior studies have mentioned parent distress related to the cold appearance of the infant. In one study, the infant was observed to be “suffering” during hypothermia treatment⁸ and in a survey in the United Kingdom, 41% of parents highlighted their distress at the pain they perceived their infant was experiencing during hypothermia.¹⁵ No studies have highlighted the longer term impact this trauma has on parents. In our study, parents self-diagnose their own PTSD and point out the need for more mental health support particularly for fathers. This study, with the extensive descriptions of the shivering and cold infant, highlights a novel aspect of the parent experience of neonatal hypothermia that may permit providers in the NICU who have become accustomed to the appearance of a hypothermic infant to again recall how unnatural and frightening this treatment may seem to those not desensitized to it.

Parents perceived that physical separation delayed their bonding with their infant and was related to restrictions placed on holding and breastfeeding during hypothermia. Parents also emphasized the anxiety and fear they experienced in the context of physical separation from their infant by ambulance transfer. The sentiment that the inability to hold an infant during hypothermia impairs the ability to bond has been previously reported.^7,8,9 Physical separation of a parent from a preterm infant has also been shown to lead to increased parental anxiety, depression, and parental detachment⁵ which can subsequently lead to an impaired parental ability to recognize infant cues, and be emotionally and physically available enough to effectively meet the infant’s needs.¹⁶ The perturbed parental emotional state may jeopardize the relationship between parent and infant, a connection which serves as the foundation for the infant’s future attachment. While this research has been done in parents of infants born prematurely, parents of infants treated with hypothermia may be at similar risk and certainly the parents in this study, with no prompts or questions about bonding, volunteered their experiences of delayed bonding in the setting of therapeutic hypothermia. In our institution, a 30 minute session of maternal holding during hypothermia has been piloted in order to address the parental experience of delayed bonding due to lack of holding. Infants have been safely held with no rewarming, no vital sign instability and no equipment dislodgement. Mothers and NICU nurses exhibited overwhelming enthusiasm for the perceived benefits of holding during hypothermia. Future research could address, on a larger scale, the safety and feasibility of both parents holding during hypothermia for more frequent or longer intervals.

Our study is unique in also reporting what were perceived to be “healing experiences” for parents of hypothermic infants. Some of these experiences were initiated by the NICU staff (e.g. diaper changes) and others were initiated by parents being strong advocates for themselves and their infants (e.g. refusing a nasogastric tube). Prior work in this area has underscored the inadequacy parents feel when they are unable or not allowed to care for their infant themselves.⁸ In our study, parents expressed the benefits of being incorporated into the routine care of the infant doing activities such as diaper changes. Parents had improved coping processes when they were invited to participate in care and felt strong as their child’s champion when they asserted their role as a parent for activities like feeding or dosing morphine. Parents also specifically commented on the impact of making extended family, as well as their other children, more competent in their infant’s care. This served to further strengthen their experience of a support as system, as well as ameliorated any distress the infant’s siblings might be experiencing.

Recommendations exist for routine psychosocial support protocols for all NICUs due to the vulnerability of parents in this setting.⁵ Recommendations include a mental health professional meeting each parent within 1–3 days of admission, screening for emotional distress within one week, and following up as needed. In another study, automatic longitudinal palliative care involvement was proposed, in response to a theme of parental loss.⁷ Routine mental health or palliative care services may not be a readily available resource, or specifically suited to each family. Greater sensitivity to the trauma and separation experiences of parents of a hypothermic infant could equally provide some benefit to the family.

Strengths of this study included an interview style that employed open-ended questions and focus groups leaders that were separate from the maternal and infant care teams allowing families to speak freely of their experiences. An additional strength was capturing the paternal experience with the largest cohort of fathers to date. Fathers described their perception that fewer resources were available to evaluate and monitor their emotional needs. Also highlighted was the potential for the father’s role to be seen as of diminished importance compared to the mother’s role. Limitations of this study include the inability to identify which parent was talking in the transcribed focus group discussion unless their role was specifically stated. There was also variability in the length of time since their admission, with certain families with older infants being at increased risk for recall bias. As this study was done at a single center, the results may not generalize to other institutions.

Conclusion:

It is well-established that long-term infant outcomes depend upon a family’s ability to effectively meet the needs of a critically ill child, while experiencing the stress of both the inpatient setting and the eventual transition home.¹⁶ The most successful NICU care is family-centered, with the goal of promoting family resiliency, best defined as the ability to manage adversity.¹⁶ Parents of infants treated with hypothermia reported the experience of their unexpected adverse delivery and their baby subsequently being treated with therapeutic hypothermia as traumatic. This trauma can be compounded by the pale, still and shivering appearance of their newborn and the delay in bonding as a result of physical separation during hypothermia treatment. A number of the stressors reported in this study should be routinely addressed as part of high level NICU care for all families. This study may help contribute towards a higher level of awareness of the parent experience.