Empathic Care of Neonates: A Critical Literature Review

Abstract

Clinical empathy is a multidimensional ability to feel the patient’s suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others. The authors performed a critical review of the literature about empathy in neonatal care, in 2 databases, and analyzed the co-occurrence of keywords in the last 10 years. Nine articles were included in the qualitative synthesis. They highlight the interconnection between empathy, communication, ethics, and palliative care. Empathy was analyzed in situations that included pain, death, and suffering in the neonate, especially related to critically ill neonates. Strategies such as self-reflection and digital storytelling may help increase the clinical empathy education of health professionals. There are gaps in research considering the measurement of clinical empathy in neonatal care, and this measurement should be encouraged. To change care practices, education on empathy for health professionals, especially physicians, should be improved.

Introduction

The World Health Organization identifies the quality of perinatal care as a crucial determinant of outcomes and as a human right. This includes patient-centered care. A framework was developed to improve key components of quality, which included the dimensions of experience of care, and availability of resources.¹ Lazzerini et al. investigated the opinions of 392 women on how to improve the perinatal quality of care. They observed that empathy was among the top suggestions included.² This issue seems to gain more importance in the post-pandemic world, after social distancing and the worldwide suffering that changed all human relationships.

Patient-centered care considers the patient’s perspectives and is unlikely to occur if empathy is not established.³ In pediatrics it is important to define patient-centered care and family-centered care. The patient-child experiences symptoms and suffering that are usually not experienced in the same way by their parents, and this should be considered. In addition, the care of the neonate should emphasize the patient’s perspective again as a concern regarding human dignity and respect for patients’ rights.⁴

Neonates are vulnerable human beings, and they perceive everything that reaches them.⁵ According to Trevarthen, the neonate has abilities, develops intersubjectivity, and teaches us, doing so in an active way.⁶ A neonate’s survival depends on a caregiver. Preterm infants are more vulnerable, as it has been suggested that contact with them increases activity in brain areas linked to the processing of negative emotions, empathy with others in pain (insula), and reduced activity in an area associated with a reward–motivation network of parental care.⁷

Empathy is a blanket term that refers to distinct ways people respond to others’ emotions.⁸ Although a “correct” and complete definition of clinical empathy is probably still yet to come, a broad definition is an emotionally engaged interest in learning more about the patient’s point of view. From a moral perspective, clinical empathy can be expressed as the human purpose of medicine. It is a multidimensional ability to feel the suffering of the patient, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others.⁹

Theories of empathy imply having insight into the mind of another. The fetus has a pre-subjective experience of life embedded in the body of another human being, and although there is no face-to-face meeting during fetal life, there are intertwined perceptions and a sense of unity as one body is “shared.” All these perceptions radically change with birth.¹⁰ Initial contact between the mother and the baby increases their synchrony, and the continuity of caregiving across development seems to impact the human brain’s formation and, thus, the ability to empathize with others’ emotions. So, early skin-to-skin contact triggers a differential developmental trajectory.¹¹ Of note, some brain regions constitute the empathy network, formed by the amygdala, the parahippocampal gyrus, the anterior insula, the temporal pole, and the superior temporal sulcus. The ventromedial prefrontal cortex, precuneus, and inferior parietal gyrus are related to the ability to process self-referential information, and taking perspective, playing a key role in social understanding.^12,13 It is noteworthy that empathy associated with the other’s pain is associated with the activation of areas where mirror neurons are found.¹⁴

The neonate holds rights but is vulnerable, and the asymmetric relationship between patients and health professionals could be alleviated by empathic care, which should be considered a therapeutic resource for health care.^4,15,16

Technological advances in health care has resulted in advances, especially in diagnosis and therapeutics, but the human dimensions of illness have been overlooked. Although neonatal mortality has decreased, quality of life remains a great challenge.¹⁷ In the Neonatal Intensive Care Unit (NICU), it has been suggested that nurse empathy is higher than physician empathy by examining parents’ reports, with differences in conversation frequency, duration, and familiarity.¹⁸ Understanding the importance of clinical empathy during the neonatal period and the mechanisms to enhance education and practices directed to improve it, could help health professionals achieve better practices.

Therefore, this review aimed to discuss the literature on empathy in neonatal care.

Methods

This is a critical review of literature including articles in the scope of the study (ie, empathy in neonatal care) and bibliometric analysis of the co-occurrence of keywords. According to Rother, these reviews are adequate to describe and debate about the up-to-date aspects of a specific issue from a theoretical point of view, considering a critical analysis of the authors.¹⁹ This review steps were the characterization of the issue and building of the research question, terms, screening in databases, eligibility, and data extraction of included articles with qualitative synthesis of main findings.

Relevant literature was captured in 2 databases—PubMed and SciELO—using the terms (neonate OR newborn) AND empathy, in the last 10 years. The literature search was performed on April 25, 2023. The articles were transported to Rayyan (https://rayyan.ai), and then titles and summaries were scrutinized. Inclusion criteria identified articles that included neonates and evaluated clinical empathy. Exclusion criteria identified articles that were related to other ages and those that did not refer to empathy related to neonatal care. All study designs were considered.

Titles and summaries of articles were screened by the first author, and the articles that did not contribute to the scope of the study were initially removed. All the studies providing qualitative or quantitative information on the subject were included. From the literature search, 219 articles were retrieved from the PubMed database and 146 from SciELO (Figure 1). Forty-seven duplicates were detected, confirmed, and removed. In total, 318 titles and abstracts were evaluated. Thirty-one articles were eligible for complete analysis. Nine articles were included in the qualitative analysis. Articles eligible for full reading were exported to Vos Viewer (version 1.6.18) to analyze the co-occurrence of the keywords. The 10 most frequent keywords, and the strength of links, were evaluated. Results were organized and discussed, considering the themes of education and neonatal care.

Figure 1:

Flowchart of the study.

Results

Communication and palliative care revealed elevated occurrences and link strengths of keywords in eligible articles (Table 1). The observation of the co-occurrence of keywords revealed that ethics, palliative care, and communication were related to empathy in eligible articles (Figure 2). The articles included in the qualitative synthesis were published between 2014 and 2022. Seven were captured in PubMed and 2 in SciELO. Three studies were developed in Brazil, 2 in Australia, 1 in the United States, 1 in Turkey, 1 in Italy, and 1 in the United Kingdom. The main characteristics of the included studies are listed in Table 2.

Table 1:

Keywords’ occurrence and link strength of eligible articles in order

Order	Keyword	Co-occurrences	Total link strength
1	Empathy	21	24
2	Communication	12	21
3	Palliative care	7	17
4	Neonatology	5	10
5	NICU	8	10
6	Ethics	9	9
7	Emotions	6	9
8	Parents	9	9
9	Qualitative research	8	5
10	Perinatal care	7	5

NICU: neonatal intensive care unit.

Figure 2:

Co-occurrence network of keywords of eligible articles. Figure generated by VOSviewer version 1.6.18; vosviewer.com.²⁰

Table 2:

Main characteristics of included articles

Authors (year); country	Title	Main results
Green et al. (2014)21; Australia	Looking like a proper baby: Nurses’ experiences of caring for extremely premature infants	The article outlines difficulties faced by nurses when caring for an extremely preterm neonate, such as his appearance, protective strategies, and attributing personality.
Pentiado et al. (2016)22; Brazil	Love and the value of life in health care: A narrative medicine case study in medical education	Narrative medicine is effective in the humanistic formation of medical students. The reflective writing allowed introspection of the student and an empathic approach.
Lee (2017)23; USA	A lesson in balancing education and empathy	A resident reflects on the ethical dilemma of learning about and respecting a dying infant in the newborn nursery. Physicians in training need to practice balancing an inquiring mind with an empathetic one.
Refrande et al. (2019)24; Brazil	Nurses’ experiences in the care of high-risk newborns: A phenomenological study	The care of high-risk neonates is broad, involves both subjective and objective issues, and includes the need to understand neonates’ feelings.
Petty et al. (2020)25; UK	Exploring the impact of digital stories on empathic learning in neonatal nurse education	The article provides insights regarding digital storytelling as a teaching strategy to enhance empathy in neonatal care.
Ilham et al. (2020)26; Australia	Neonates as intrinsically worthy recipients of pain management in neonatal intensive care	Pain management in the neonate is neglected, and this should be understood in an ethical basis. To ensure pain management in these patients, empathy is fundamental.
Köktürk Dalcali et al. (2022)27; Turkey	Emotional responses of neonatal intensive care nurses to neonatal death	The emotional responses of NICU nurses to neonatal death was analyzed, and empathy was one of the codes derived from content analysis.
Bembich et al. (2022)28; Italy	Empathy at birth: Mother’s cortex synchronizes with that of her newborn in pain	Maternal empathic cortical response to baby pain was guided and synchronized to the newborn’s cortical response to pain.
Mufato et al. (2022)29; Brazil	Nurses’ empathy with newborns hospitalized in Neonatal Intensive Care Units	Nurses interact with neonates during their work, and some of these interactions are characterized as empathic. The experience of seeing the neonate in the incubator, the expression of crying, the burden of painful procedures, and the identification of pain stand out.

NICU, neonatal intensive care unit.

Health Professionals’ Education on Empathy

Lee, a resident of the Preventive Medicine Program, reported her experience after examining a neonate admitted to the newborn nursery with a severe condition named thanatophoric dysplasia who died 30 minutes after her examination. She wanted to examine the neonate, as it was a rare condition she had never seen, and the nurse asked her if it was necessary to manipulate the neonate so much. She felt bad, as she did not provide comfort and respectful care for the neonate, who died shortly after. Consequently, she noticed that physicians in training need to balance between a curious mind and an empathetic one. She highlights that empathy should never be forgotten. A lack of empathy resulted in disappointment and sadness.²³

Pentiado et al. presented a case of a 14-day-old neonate with a diagnosis of Patau syndrome, reported by a student. The article balances the difficulties faced by the mother regarding the neonate’s appearance, fear of death, denial, acceptance, and the importance of the student’s positioning from the mother’s and neonate’s perspectives. Interestingly, the article reinforces that narrative competence and genuine contact, confirming and showing concern about the patient’s values, are fundamental to establishing a good physician–patient relationship and that a holistic approach to patient care is the challenge of medical schools. There is an increasing need to understand the disease and the unique patient. To achieve the holistic approach of students, the article’s authors suggest that arts-related activities, such as narrative medicine exercises, psychodrama, and Balint groups, could enhance empathic skills.²²

Petty et al. explored the effect of digital stories on empathic learning in nurses. The article reinforces empathy as the ability to communicate a sensitive consciousness and statement of another’s sentiments and the distinguishing meanings that are linked to them and that this can be enhanced by educational interventions. In the quantitative analysis, the article’s authors observed that these stories have improved empathy regarding parents and babies by 50.4%, but most of their results report parents’ perspectives and experiences. The patient-centered care and family-centered care approaches are mixed throughout the article. The difficulty of teaching students how to give person-centered care is also discussed, considering subjectivity and nebulous concepts.²⁵

Empathy in Neonatal Care

Nurses involved in neonatal high-risk care attribute meaning to their experiences.²⁴ During the care of these patients, they reported that it is fundamental to understand the neonate, especially during procedures that are sometimes excessive. The neonate shows what he is feeling through indirect indications, such as facial expression, temperature control, and crying, and only an experienced professional could notice this. In addition, it was reported that, despite all the technological supplies that exist in the neonatal unit, nurses think that human contact must prevail.

The neonate is vulnerable and deserves care. Pain in the neonate is rarely identified and treated. Ilhan et al. suggested that concern with the neonate’s pain is influenced by empathy, so health professionals should collectively improve empathy, especially in the NICU.²⁶ To change professional practices it is necessary to discuss ethical issues, considering, for example, standards for decision making, the neonate’s best interests, balancing risks and benefits, and involving patients’ rights and quality of life. A balance between procedures and pain buffers is then ethically justified. The article cites the codes of conduct that guide health professionals’ practices and the importance of understanding pain management as a human right. The neonate, who is a human being, is intrinsically worthy of this right. Dignity is discussed in the article, extensively and reflexively as an experience that occurs only when health professionals engage with their patients. Therefore, health professionals’ and patient’s dignity are linked. They conclude that empathy is the impelling force for ethical decision making, empowering health professionals to think about the risks and benefits.

To determine the emotional responses of nurses to neonatal deaths in Turkey, Köktürk Dalcali et al. conducted qualitative research.²⁷ Two themes emerged from the content analysis: 1) being a nurse in the NICU, and 2) experiencing neonatal death. Empathy was one of the codes of the first theme. Nurses who worked in the NICU reported that an empathetic approach was frequent during neonatal care. Empathy was pointed out as fundamental to communication in care. The authors suggested that, because most health professionals who work in the NICU are female gender and some are already mothers, this may have facilitated an empathetic approach. Nurses reported they experienced an empathetic approach during their practices and in helping the families, but they did not specify the care practices.

Bembich et al. enrolled 16 mother–full-term neonate dyads after a vaginal delivery and investigated mother–neonate optical topography in response to a heel-pick in the neonate on the second day of life.²⁸ This procedure was performed with oral glucose for pain management. Optical topography detected and localized cortical activity by monitoring the concentration of oxyhemoglobin through near-infrared light. The painful procedure elicited a cortical activation both in the neonate, who was picked, and, in the mother, who observed the procedure. The neonate showed activation of the superior part of the primary motor and somatosensorial cortex, the area of representation of nociception processing in the neonate’s brain. The mother showed activation of the posterior and anterior parietal cortex, including the somatosensorial cortex. These results reinforced the knowledge that, shortly after birth, there is a neurophysiological co-regulation process between the neonate and the mother, and this may signalize the mother’s caring relationship toward the neonate.

A Brazilian study investigated female nurses’ meaning attributed to the care of neonates in the NICU using thematic analysis and a hermeneutic phenomenological approach.²⁹ Neonatal clinical severity, crying, and the load of painful procedures suffered by the neonate were situations that attributed an empathetic meaning to the nurse. Empathy resulted in actions toward the neonate such as touching, cuddling, talking, and observing pain signals. Nurses who work in the NICU think that empathy is a relationship with affection that aims to reduce the neonate’s suffering from separation from the mother. This suffering is expressed as a manifestation of reflex, sleeping, and eating disorganization.

The care of extremely preterm neonates is stressful. In this scenario, Green et al. evaluated nurses who worked in a NICU with neonates aged < 24 weeks of gestation.²¹ Three themes emerged from the analysis: 1) a fetus vs an actually viable baby, 2) protective plans, and 3) attributing a personality. Physical aspects, such as the gelatinous, fragile skin and fused eyes that resembled the fetus, explained the difficulty of seeing the extremely preterm neonate as a baby. As a result, nurses tended to keep some distance from the baby to face the pessimism experienced as a negative coping mechanism. Although they experienced difficulties in providing care to these neonates, they were convinced that they had personalities that expressed their humanity. Nurses believed that preterm neonates had preferences and the ability to perceive stimuli and react positively or negatively to them.

Discussion

This study provides an overall picture of empathy in the care of neonates and points out research gaps in this area. The analysis of the co-occurrence of keywords allowed us to infer that empathy has been studied connected to communication, ethics, and palliative care, revealing attention to humanistic issues when patients are in critical situations that threaten life, end-of-life, or chronic conditions. The aspects of included studies are discussed below, with implications for education and care.

Implications for education

There is a need to improve the education of health professionals on clinical empathy. Lee’s reflections about the objectification of patients meet the most frequent complaints of patients.²³ Patients hold rights and should be protagonists of their care.³⁰ From the reflections presented in this article, one can see the need to reposition children in health care and the demand to reinforce education during health professionals’ training as recognizing it that was not a good moment to examine a neonate who was in the process of dying. Death and suffering were the neonate’s perspective at that moment and all he needed was comfort, and our actions should not result in discomfort. This education can be strengthened by writing, reflecting, and interpreting events, considering the patient’s history, values, knowledge, and feelings. In an integrated way, students may be more self-aware and empathic. Petty et al., through digital stories, showed that empathy can be increased.²⁵ This characteristic of empathy has also been reported by Zaki,³¹ and he suggests that empathy can be improved by imagining how the person feels, how something affected his life, and most importantly, by listening to the other.

It has been pointed out that there is a lack of empathy studies in professional practice contexts and throughout the professional education process in Brazil, and this should change.³² Adding to this discussion, the authors must emphasize that education on clinical empathy should be available to all health professionals, including physicians. The Association of American Medical Colleges stated that “physicians must be compassionate and empathetic in caring for patients.”³³ In fact, physician empathy is a curative element of patient–physician communication. Surprisingly, it has been suggested that empathy reduces during graduation and residency, just when students are faced with clinical practice. In addition, this can influence professionalism and the quality of care, which is worrisome. Education in clinical empathy has a framework supported by the American Medical Association in the concept of medical ethics, asserting that a physician must be dedicated to providing both qualified medical care with compassion and respect for human rights and dignity.^34,35 The authors suggest that all health professionals’ education, especially physicians’ education, could result in more empathic care.

Implications for care

In this review, studies reported the importance of communicating with neonates during care, that it is difficult to empathize, especially with critically ill and very preterm neonates, and the need to change the neonates’ position to the center of care. Refrande et al. reinforced that high-risk neonates should be cared for both objectively and subjectively and that understanding the neonates’ signs is fundamental to communicating with them but requires professional experience.²⁴ Green et al. pointed out difficulties in empathizing with extremely preterm neonates and that efforts should be made to improve it.²¹ The authors recognize the difficulty of providing empathic care, especially to high-risk neonates, and that although health professionals know its importance, they do not work considering this point of view when they identify their care practices. From a practical point of view, this requires that the health professional balance the neonates’ best interests and also the patients’ perspectives.

The observation of pain in the neonate and the response in his mother was surprising.²⁸ Although the present study did not aim to analyze health professionals’ perceptions about neonatal pain, it did aim to analyze the neonate during a health care procedure. Rizzolatti et al. described that when an individual observes and recognizes emotions in others caused by disgusting or painful stimuli, there is activation of the cingulate cortex and the insula.³⁶ The authors want to reinforce the need to observe and recognize a patient’s emotions as a foundation for empathy.

There is a need to change the neonate’s position in the process of care to a central one. Neonates’ care has indeed changed over time to more humanistic care. Some strategies have been implemented with this objective, such as the Neonatal Individualized Developmental Care Assessment Program, a personalized developmental care, based on the “synactive” theory and a family-centered approach. The Neonatal Individualized Developmental Care Assessment Program improves outcomes, both in the short and the long term, especially in critically ill neonates.³⁷ The authors would like to provoke a reflection on the care that is centered in the family and child-centered care in the neonatal scenario as a way to advance this holistic care. Mufato and Gaíva consider the neonate the center of care as it should be and emphasize that empathy with the neonate is what values the other in the nurses’ experiences.²⁹ The resulting actions aimed to reduce the suffering of the neonate. Exposure to human voices seems to increase preterm neonates’ stability in terms of vital signs and behavioral measures.³⁸ Thus, when one empathizes with the neonate and an action results, more clinical stability may be achieved, revealing an effective aspect of empathy on short-term outcomes, a moral aspect that reflects a bioethical feature of empathy.^4,39 Dijke et al. stated that empathy has the potential to be a key concept in the domain of care ethics but faces challenging concerns that require further research.⁴⁰

Although empathy has been studied concerning neonatal procedures, preterm neonates, and painful and suffering situations, empathic care should cross all levels of care, including the NICU, but also rooming-in and full-term neonates.

Strengths and Limitations

The strengths of this review are the importance of the issue, the paucity of studies regarding clinical empathy in the neonate, and the bibliometric analysis of co-occurrence. To the authors’ knowledge, there has been no review study on this issue. The limitations concern the data extraction, which was carried out by one researcher; that the authors screened only 2 databases, which may have reduced the number of articles retrieved; and that the authors did not retrieve articles that measured empathy in neonatal care, suggesting research gaps.

Ethical Considerations

This review was conducted according to the recommendations for good scientific practice, respecting other researchers’ work. The review process was also reported ethically and clearly.

Conclusion

This review emphasizes the interconnection between empathy, communication, ethics, and palliative care in published studies. Considering the care of the neonate, clinical empathy values the best interests of the patient, leading to an improvement in ethical decision making. Literature about this issue is scarce. Empathy was analyzed in situations that included pain, death, and suffering, especially related to critically ill neonates. The difficulty of empathizing with extremely preterm neonates was reported. Low-risk neonates were underrepresented. Strategies such as self-reflection and digital storytelling may help increase the clinical empathy education of health professionals. There are gaps in research considering the measurement of clinical empathy in neonatology, and its measurement should be encouraged. To change care practices, education on empathy for health professionals, especially for physicians, should improve.