Nurturing compassion in neonatal end-of-life care: a qualitative exploration of palliative care nurses’ roles and experiences

Abstract

Background

Compassion is central to neonatal end-of-life care, ensuring comfort and dignity for neonates with life-limiting conditions and their families. However, the emotional and ethical challenges faced by neonatal palliative care nurses, particularly in culturally diverse settings, remain underexplored, limiting the development of effective support mechanisms.

Aim

This study aims to explore the lived experiences of neonatal palliative care nurses in Egypt, focusing on how they cultivate and sustain compassion in end-of-life care. It examines the role of compassion in shaping caregiving practices, ethical decision-making, and coping with emotional distress. Additionally, it investigates the cultural and institutional facilitators and barriers that influence compassionate care delivery, generating evidence-based recommendations for nursing education, practice, and policy.

Methods

A qualitative phenomenological study guided by Interpretative Phenomenological Analysis (IPA) was conducted. Forty nurses from four neonatal intensive care units (NICUs) in Egypt completed semi-structured interviews and reflective journaling. Data were analyzed using a two-phase approach, incorporating Lazarus and Folkman’s Transactional Model of Stress and Coping to contextualize findings within broader emotional regulation and resilience frameworks.

Results

Analysis yielded seven themes. Nurses reported developing deep emotional bonds with neonates and families, which enhanced care quality but also intensified personal grief and ethical dilemmas. Compassion emerged as a key mechanism for facilitating empathetic communication and holistic care, yet sustaining it was hindered by compassion fatigue, high workloads, insufficient training, and cultural expectations complicating end-of-life decision-making.

Conclusion

Compassion is crucial in mitigating neonatal palliative care nurses’ emotional and ethical burdens. To sustain compassionate care, robust institutional support, culturally responsive training, and interdisciplinary collaboration are essential. These findings inform nursing education, policy, and practice, emphasizing strategies to enhance nurse well-being and improve care quality in diverse healthcare settings.

Implications for Practice

Strengthening institutional policies, integrating resilience training, and developing culturally sensitive communication strategies are critical to ensuring sustainable, compassionate care in neonatal palliative settings.

Introduction

Neonatal end-of-life care is a critical and specialized domain within palliative care that focuses on providing comfort, dignity, and comprehensive support to neonates with life-limiting conditions or those nearing death [1–3]. According to the World Health Organization, palliative care is defined as the active total care of patients whose disease is not responsive to curative treatment, emphasizing the early identification and management of physical, psychosocial, and spiritual needs [4]. In the context of neonates, however, this definition requires adaptation to accommodate their unique physiological vulnerabilities, developmental needs, and the complex emotional dynamics at play [5–7]. Unlike curative interventions that primarily aim to prolong life, neonatal palliative care is dedicated to alleviating suffering and optimizing the quality of life during the neonate’s remaining time, with an emphasis on both the infant’s and family’s well-being [8].

Although end-of-life typically signifies the final phase before death, for neonates, it spans a broader continuum of palliative and supportive measures once a life-limiting condition is diagnosed [9]. According to guidelines from the World Health Organization (WHO) and the American Academy of Pediatrics (AAP), neonatal end-of-life care may begin well in advance of the active dying stage, ensuring comfort, dignity, and appropriate psychosocial support for both the infant and the family throughout the illness trajectory [8, 10]. This approach underscores that such care is not limited to the neonate’s final days or hours but can be introduced at any point to address evolving physical, emotional, and spiritual needs [11].

At the heart of neonatal palliative care is compassion, a multifaceted construct defined as the awareness of another’s suffering paired with a committed desire to alleviate it [12, 13]. In this setting, compassion transcends basic empathy or kindness; it necessitates deliberate, active engagement with both the dying neonate and the grieving family [14]. Nurses, as primary caregivers in neonatal intensive care units (NICUs), are uniquely positioned at the intersection of clinical expertise and emotional labor [15, 16]. They are tasked with the dual responsibility of ensuring the physical comfort of the neonate while also providing critical psychosocial support to families facing profound grief [17, 18]. This dual role, although ethically imperative and professionally fulfilling, also exposes nurses to significant emotional challenges, as they must constantly manage their own emotional responses while supporting others [19, 20].

Global neonatal mortality remains alarmingly high. The World Health Organization reports that approximately 2.4 million neonates die annually within the first 28 days of life, with the majority of these deaths occurring in low- and middle-income countries [21]. In high-income countries, neonatal mortality is also significant due to factors such as extreme prematurity and congenital anomalies [22]. These sobering statistics underscore the urgent need for neonatal palliative care approaches that not only uphold the dignity of dying infants but also address the emotional, ethical, and cultural complexities inherent in such care [23, 24].

Advances in neonatal care, including integrative family support models, enhanced pain management techniques, and the development of holistic care protocols, have improved palliative care delivery in NICUs [25, 26]. Nonetheless, challenges persist in ensuring that compassionate care practices are fully integrated into clinical protocols, especially in culturally diverse and resource-limited settings [12, 13, 27]. In many contexts, particularly in low- and middle-income countries, cultural norms that prioritize life preservation can conflict with palliative care principles, resulting in ethical dilemmas and added emotional burdens for caregivers [28, 29].

Interdisciplinary collaboration is a cornerstone of neonatal palliative care [30–32]. Nurses routinely work alongside physicians, social workers, chaplains, and bereavement counselors to deliver holistic care [33]. In this collaborative environment, nurses often function as mediators between the medical team and families, ensuring that clinical decisions and emotional support strategies are tailored to the unique needs of each case [34, 35]. However, this role amplifies the emotional demands on nurses, who must navigate complex ethical decisions, cultural expectations, and the personal toll of repeated exposure to loss [36, 37]. Emotional resilience, a person’s capacity to adapt successfully in the face of acute stress or prolonged adversity, represents a crucial factor in helping nurses cope with these high-stakes, emotionally charged situations [38, 39]. In neonatal palliative care, cultivating emotional resilience may enable caregivers to sustain compassion despite frequent exposure to grief, ethical complexity, and the challenges of interdisciplinary collaboration [40]. By equipping nurses with strategies to recover from stress more effectively, emotional resilience serves as a protective mechanism that can mitigate burnout and support both nurses’ well-being and the quality of care they deliver [41].

Cultural beliefs and practices surrounding death, dying, and bereavement further complicate the delivery of neonatal palliative care [42]. In many cultural contexts, particularly in resource-limited settings, there is a strong emphasis on sustaining life at all costs, even when a neonate’s prognosis is terminal [43]. Such cultural imperatives can create significant ethical tensions for nurses, who must balance these expectations with the need to provide care that prioritizes comfort and dignity [6, 44]. Recent literature on cultural safety, including Carnevale’s hermeneutic rapprochement model, advocates for a framework in which both care providers and families engage in a process of mutual respect and shared decision-making [45, 46]. Integrating such a culturally safe approach is essential for resolving the conflicts that arise from differing values and for ensuring that compassionate care is not merely an add-on but a core element of clinical practice [4, 47].

Despite growing recognition of neonatal palliative care’s importance, much of the existing literature remains predominantly patient or family-focused, leaving nurses’ unique experiences underexamined [48, 49]. In particular, little is known about how frontline caregivers themselves sustain compassion while managing the intricate emotional, ethical, and cultural factors inherent in end-of-life care for neonates [31, 49–51]. Although some studies acknowledge the high psychological toll on nurses, few offer in-depth analyses of the everyday realities that shape their responses to recurring loss, ethical uncertainties, and familial expectations in multicultural or resource-limited environments [3, 50]. Consequently, current interventions and support structures may overlook the multifaceted challenges nurses face, ultimately hindering efforts to safeguard both professional integrity and emotional well-being [1, 52, 53].

Moreover, while compassion has been highlighted as integral to enhancing neonatal palliative care quality, there is limited clarity on how it intersects with the broader institutional, cultural, and personal dimensions of the caregiving process [54–56]. Research tends to address compassion in isolation from other critical factors, such as institutional policies, staffing constraints, and cultural norms, leading to a fragmented understanding of how nurses integrate compassion into daily practice under real-world conditions [2, 57, 58]. Therefore, a deeper, phenomenological exploration of these lived experiences is crucial, as it can capture the interplay between nurses’ internal coping strategies and external pressures, informing tailored interventions that holistically support compassionate care for neonates and their families.

Aim, objectives, and research question

Aim

This study seeks to understand how neonatal palliative care nurses in Egypt experience and sustain compassion in their daily practice.

Objectives

1. To explore how nurses develop and integrate compassion into their caregiving.

2. To examine the ethical and emotional challenges they encounter in neonatal end-of-life care.

3. To identify the coping mechanisms they employ to mitigate emotional distress and maintain compassion.

4. To determine the institutional and cultural factors that shape their ability to provide compassionate end-of-life care.

Research question

How do neonatal palliative care nurses in Egypt experience and sustain compassion while navigating the emotional, ethical, and cultural complexities of end-of-life care?

In summary, this study addresses a crucial gap in the literature by focusing on the unique challenges that neonatal palliative care nurses face in sustaining compassion. Through a comprehensive exploration of their experiences, coping strategies, and the cultural and institutional contexts in which they work, the study aims to generate evidence-based recommendations for nursing education, policy, and practice. Ultimately, the findings seek to improve the overall quality of neonatal end-of-life care by empowering nurses with strategies to manage the dual demands of clinical excellence and compassionate caregiving.

Materials and methods

Research design

This study employed a qualitative phenomenological approach to explore the lived experiences of nurses providing palliative care in neonatal intensive care units (NICUs) in Gharbia Governorate, Egypt. Specifically, an Interpretative Phenomenological Analysis (IPA) design was selected to examine and interpret participants’ subjective experiences within their unique institutional and cultural contexts [59]. The IPA approach is particularly well-suited for exploring the essence of how nurses deliver compassionate care, manage emotional stress, and navigate institutional barriers inherent to neonatal end-of-life care [60, 61]. While this study primarily employed IPA to explore participants’ lived experiences without preconceptions, theoretical frameworks were introduced only during the secondary interpretative phase to help contextualize findings. The initial data collection and analysis remained true to IPA’s phenomenological principles, allowing participants’ experiences to emerge naturally without theoretical constraints. This approach aligns with Smith et al.’s (2003) concept of the double hermeneutic, where researchers first strive to understand participants’ experiences on their own terms before engaging in deeper interpretation [59].

Our study is firmly grounded in the traditions of phenomenological philosophy. Informed by Husserl’s emphasis on intentionality and the lifeworld, the pre-reflective experience of being, and Heidegger’s exploration of being in the world, our research is dedicated to uncovering the essence of participants’ lived experiences within their professional and cultural settings. As conceptualized by Smith et al. (2003), IPA is particularly attuned to these philosophical underpinnings as it allows for the exploration of meaning-making while recognizing the researcher’s role in interpretation [59]. The double hermeneutic inherent to IPA, whereby participants make sense of their own experiences and researchers, in turn, interpret that meaning, ensures that our findings remain both faithful to participants’ lived realities and open to broader cultural and existential interpretations. By embedding these phenomenological foundations, our methodological approach enhances rigor, depth, and sensitivity in capturing the emotional and ethical complexities of neonatal palliative care.

Settings

The study was conducted in four NICUs within the Gharbia Governorate, Egypt, representing both public hospitals and academic medical centers. A stratified purposive sampling approach was employed to capture variations in institutional structures, patient demographics, and resource availability. For example, one setting was a tertiary-level NICU in an academic medical center affiliated with the Ministry of Higher Education and Scientific Research, housing 32 incubators across five rooms and serving as a major training and research hub. In contrast, a secondary-level NICU in a public hospital under the Ministry of Health and Population featured 15 incubators distributed over three sections and served both urban and rural populations in a resource-constrained environment. A third setting was located in an international teaching hospital with 12 incubators, emphasizing professional development alongside clinical care, while the fourth setting was a public hospital NICU with 20 incubators, reflecting a lower-resource context. According to data from the Gharbia Health Directorate, these four NICUs collectively account for approximately 63% of the total NICU capacity in the region, thereby providing a comprehensive basis for examining how institutional differences affect the provision of neonatal end-of-life care.

Sample

A purposive sampling technique was used to recruit registered nurses with direct experience in neonatal palliative care. The inclusion criteria for participants were as follows: (1) registered nurses with more than two years of experience in neonatal care, including exposure to palliative cases; (2) current employment in one of the selected NICUs; and (3) willingness to participate in both semi-structured interviews and reflective journaling. Exclusion criteria included nurses in primarily administrative roles with minimal direct patient care and those with less than six months of continuous service in their current NICU role. The final sample consisted of 40 nurses distributed across the four NICUs: 12 from Setting 1, 10 from Setting 2, 8 from Setting 3, and 10 from Setting 4. This distribution reflected the relative size and patient volume of each NICU, ensuring proportional representation. The sample size was determined using the principle of data saturation, with recruitment ceasing when no new themes or insights emerged from the data. Unlike prior qualitative studies in neonatal palliative care nursing, which often included smaller samples (e.g., 9–12 participants) [1, 57, 62, 63], our larger sample allowed for a more diverse and comprehensive exploration of the phenomenon, particularly regarding emotional, ethical, and cultural challenges.

Continuous assessment of saturation during data collection and analysis ensured a rigorous and in-depth understanding of the nurses’ lived experiences. To ensure a balanced representation of diverse perspectives, the sample was stratified by years of experience and institutional affiliation. Nurses were categorized into three experience groups: 2–5 years (n = 14), 6–10 years (n = 16), and over 10 years (n = 10). Additionally, 22 nurses were recruited from public hospitals (Settings 2 and 4), while 18 were from academic medical centers (Settings 1 and 3). This stratification allowed the study to capture a wide range of experiences, reflecting both the nurses’ professional expertise and the influence of institutional contexts on their practice. Recruitment was facilitated through presentations at staff meetings, flyers posted within the NICUs, and snowball sampling, where initial participants referred colleagues who met the inclusion criteria. Written informed consent was obtained from all participants, emphasizing the voluntary nature of the study and the sensitivity of the research topic. Participants were assured of their right to withdraw from the study at any time without penalty. To mitigate potential biases, such as self-selection bias or over-representation of nurses comfortable with discussing end-of-life care, recruitment efforts were closely coordinated with unit managers to encourage participation from a diverse range of staff. The larger sample size and stratified approach ensured that the study provided a more holistic and transferable understanding of neonatal palliative care nursing, significantly contributing to the existing literature.

Data collection tools

Data were collected using a multi-method approach designed to capture the depth and complexity of nurses’ lived experiences in neonatal palliative care. This approach integrated two complementary qualitative methods, semi-structured interviews and reflective journaling, to facilitate methodological triangulation and enhance the overall credibility of the findings [64, 65].

Semi-structured interviews

Semi-structured interviews served as the primary data collection tool. An interview guide was developed based on an extensive review of the literature on neonatal palliative care, compassion in nursing, and the emotional challenges of end-of-life care. The guide was refined through expert consultation with specialists in neonatal nursing and palliative care and pilot-tested with five NICU nurses (who were excluded from the final sample). Structured to begin with broad, open-ended questions about nurses’ roles and experiences, the guide gradually progressed to more specific questions addressing compassionate care, emotional stressors, ethical dilemmas, and institutional and cultural influences. Interviews were conducted in private, quiet rooms within the hospitals to ensure confidentiality and minimize interruptions. Each session, lasting approximately 60–90 minutes, was audio-recorded with the participants’ informed consent, and detailed field notes were taken to capture non-verbal cues and contextual observations.

Reflective journaling

Reflective journaling was employed as a complementary data collection method to capture the longitudinal evolution of participants’ perceptions, emotions, and professional experiences in neonatal palliative care [66]. To ensure consistency and methodological rigor, participants received structured written guidelines outlining the objectives of the journaling process [67]. They were encouraged to document their evolving perceptions of neonatal palliative care, emotional responses to specific clinical encounters, reflections on their ethical and institutional challenges, and observations on the cultural influences shaping their caregiving practices. Each participant was required to record a minimum of three journal entries per week over two weeks, facilitating an ongoing reflective engagement beyond the immediate interview setting. Consistent with the idiographic and interpretative principles of Interpretative Phenomenological Analysis (IPA), reflective journaling enriched the depth and contextualization of participants’ narratives by capturing both real-time emotional responses and retrospective meaning-making processes [68]. This method aligns with IPA’s commitment to capturing nuanced, evolving lived experiences. IPA acknowledges that participants’ perceptions are not static but develop over time, shaped by ongoing reflection and situational re-evaluation [69]. By integrating reflective journaling, we allowed participants to engage in deeper meaning-making beyond the moment of the interview, reinforcing IPA’s emphasis on idiographic depth and temporal subjectivity.

Rather than validating or cross-checking interview data, reflective journaling functioned as an interpretative extension, allowing us to trace participants’ evolving appraisals and deeper engagement with their lived realities. These reflections were holistically analyzed alongside interview transcripts to ensure continuity in the interpretative process while preserving the complexity of individual experiences. Following IPA’s analytical principles, reflective journal entries were first examined independently to preserve their idiographic essence before being integrated with interview data. This ensured that emergent themes from interviews were not preconditioned by journal content but instead enriched through a layered interpretative process. Convergent insights across both data sources reinforced theme validity, while divergent reflections added complexity and nuance to the findings. This dual-method approach strengthened the study’s ability to examine the fluidity of meaning-making in neonatal palliative care nursing, offering deeper insights into the interplay between emotional resilience, professional identity, and the ethical dimensions of end-of-life care.

Data integration process

A two-phase integration process was employed to synthesize interview and reflective journal data [70]. In Phase 1 (Independent Analysis), transcripts and journal entries were coded separately using IPA’s six-step framework, preserving the temporal order of the data sources [71]. This allowed for the capture of distinct insights from both immediate interviews and reflective narratives. In Phase 2 (Cross-Source Integration), themes from each source were systematically compared and merged, with convergent patterns reinforcing theme validity and divergent findings providing additional nuance [72]. For instance, Participant 7 initially stated, “You can’t help but love these little ones,” during the interview, capturing an immediate, unfiltered emotional response. However, a subsequent journal entry (“Day 3: Found myself staying late again to comfort baby A. These emotional bonds grow stronger, making professional boundaries increasingly challenging” - Journal-P7) revealed an evolving struggle with emotional attachment. This exemplifies IPA’s double hermeneutic: the participant makes sense of their experience, while we, as researchers, interpret how their reflections add layers of meaning over time. This process provided a comprehensive, temporal understanding of participants’ experiences while preserving the idiographic focus central to IPA.

Transcription and translation

Interviews were transcribed verbatim by a professional transcription service under strict confidentiality agreements [73, 74]. The lead researcher reviewed all transcripts against the audio recordings for accuracy. As the interviews were conducted in Arabic, a team of bilingual researchers translated the transcripts into English, ensuring that linguistic nuances and cultural meanings were preserved. Back-translation was performed on a sample of transcripts to verify the accuracy of the translations [75].

Rigor, reflexivity, and interpretative engagement

We adhered to key IPA-specific principles to ensure rigor and depth, emphasizing interpretative engagement, idiographic commitment, and transparency throughout the research process [76]. The lead researcher maintained a reflexive journal to document interpretative insights, evolving analytical decisions, and potential biases throughout the study [77]. This hermeneutic reflexivity ensured that interpretations remained faithful to participants’ lived experiences while critically engaging with their meaning-making processes [76]. Analytical depth was reinforced through sustained engagement with the data, including multiple close readings of transcripts, detailed annotation of significant statements, and the development of emergent themes using IPA’s six-step framework [78]. Peer debriefing sessions with qualitative researchers experienced in phenomenological methods further refined interpretations, challenging assumptions and strengthening idiographic sensitivity to participants’ narratives [79]. Rather than employing traditional validation techniques, such as triangulation or member checking, which are not central to IPA’s epistemological stance, credibility was ensured through deep immersion in participants’ narratives, hermeneutic meaning-making, and transparency in interpretative decision-making [80]. This approach aligns with IPA’s commitment to exploring subjective experiences in depth while maintaining the interpretative richness essential to phenomenological inquiry. Finally, all procedures adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [81], ensuring methodological transparency and alignment with the high standards of scholarly qualitative research [82].

Procedure

Following ethical approval from the Institutional Review Board, a pilot study was first conducted with five eligible nurses (who were subsequently excluded from the final sample) to assess and refine the semi-structured interview guide and reflective journaling protocol; feedback from this phase informed minor revisions that ensured the clarity, cultural appropriateness, and logistical feasibility of the data collection instruments. Recruitment proceeded using purposive sampling, complemented by snowball sampling, whereby nurses with direct experience in neonatal palliative care were identified through informational sessions in each NICU and the distribution of flyers in hospital workspaces, and recruitment continued until data saturation was achieved, as evidenced by the stabilization of emerging themes during preliminary analysis. Prior to data collection, all participants attended a briefing session where the study’s objectives, procedures, and potential risks were explained, and written informed consent was obtained, emphasizing their right to withdraw at any time without penalty.

The main data collection phase involved two complementary methods: in-depth semi-structured interviews and reflective journaling. Interviews were conducted in private rooms away from the NICUs to ensure confidentiality, lasted approximately 60 to 90 minutes, and were audio-recorded with the participant’s consent, with detailed field notes taken to capture non-verbal cues and contextual observations. Immediately following the interviews, participants were provided with written guidelines for reflective journaling and were asked to maintain journals for a period of two weeks, documenting their emotional responses, reflections on specific clinical encounters, and insights into the institutional and cultural contexts influencing their practice; they were encouraged to record at least three entries per week to ensure a comprehensive, longitudinal account of their experiences. Throughout the data collection process, the researcher maintained regular communication with participants to address any emerging concerns and to ensure that the process remained sensitive to the emotional demands of neonatal end-of-life care while all collected data were securely stored and managed in accordance with institutional data protection protocols.

Data analysis

Data analysis followed a rigorous two-phase process, adhering to the Interpretative Phenomenological Analysis (IPA) framework while ensuring methodological depth [70].

• Phase 1: Phenomenological Openness

The first phase prioritized phenomenological openness, allowing participants’ lived experiences to emerge naturally without theoretical imposition. This involved repeated close readings of interview transcripts and reflective journals, detailed annotation of significant statements, and the iterative development of emergent themes across individual cases. NVivo (version 12) was used to systematically organize and code data, with three independent researchers coding the dataset and resolving discrepancies through consensus [83]. Additionally, non-verbal observations captured in field notes enriched the contextual interpretation of participants’ narratives.

• Phase 2: Theoretical Contextualization

In the second phase, theoretical frameworks were introduced as interpretative lenses to deepen analysis while maintaining phenomenological integrity. This approach aligns with IPA’s double hermeneutic by first preserving participants’ lived meanings before applying broader conceptual frameworks [84]. Phenomenological research often benefits from subsequent theoretical contextualization, as it enhances interpretative depth without imposing pre-existing structures on participants’ experiences. As Smith et al. (2022) note, IPA allows researchers to engage with participants’ lived experiences in an inductive manner before situating findings within broader theoretical constructs [69]. Our study adheres to this tradition, ensuring that theoretical insights do not pre-structure the analysis but rather serve to enrich and contextualize emergent themes.

Integration of interviews and reflective journals

To enhance interpretative depth, data from interviews and reflective journals were systematically integrated and cross-verified. This dual-source approach captured both real-time reflections and retrospective meaning-making, allowing for a more dynamic understanding of how emotional and ethical challenges evolved over time. Temporal changes between interviews and journal entries were explicitly examined to track shifts in participants’ perceptions and emotional responses over the two-week journaling period. This comprehensive, two-tiered analytical approach ensured a nuanced, transparent, and methodologically robust interpretation of the complex emotional, ethical, and institutional experiences associated with neonatal palliative care [85, 86].

Ethical considerations and approval

Ethical considerations were paramount throughout this study. The research protocol was designed with strict adherence to the highest ethical standards for research involving human participants. The study was reviewed and approved by the Scientific Research Ethics Committee at the Faculty of Nursing, Tanta University (Approval No. 526-9-2024), ensuring that all aspects, from participant recruitment to data management, complied with institutional and regulatory guidelines. All participants were fully informed about the study’s purpose, procedures, and potential risks and were explicitly assured of their right to withdraw or pause participation at any time without penalty. This research was conducted in full accordance with the Declaration of Helsinki. Informed consent was obtained in writing prior to data collection. To address the sensitive nature of neonatal end-of-life care, the research team trained in cultural competence and familiar with Egyptian healthcare practices implemented measures to manage potential participant distress, including providing access to counseling services when necessary. Confidentiality and anonymity were rigorously maintained throughout the study. Data were anonymized and securely stored in accordance with institutional data protection policies, with clear protocols in place to ensure the safe handling of both electronic and hard copy materials. Upon completion of data collection and analysis, participants were thanked for their contributions, and those who expressed interest received a summary of the study’s findings. This comprehensive ethical oversight not only protected the rights and well-being of the participants but also reinforced the study’s commitment to conducting research that contributes valuable insights into compassionate palliative care in neonatal nursing.

Results

Overview of data analysis process

A total of 40 nurses from four neonatal intensive care units (NICUs) in the Gharbia Governorate, Egypt, participated in the study, reflecting a diverse cross-section of the nursing workforce in terms of age, professional experience, and educational background. This heterogeneity, characterized by varied levels of clinical expertise and different institutional contexts, enhanced the depth and transferability of our findings regarding neonatal palliative care. Detailed demographic characteristics are provided in Table 1. The diversity within the sample enabled a comprehensive exploration of how demographic factors influence nurses’ experiences and practices in delivering compassionate, end-of-life care to neonates, thereby strengthening the overall rigor of the analysis.

Table 1.

Demographic characteristics of participants (N = 40)

Characteristic	n	%
Age Range (years)
25–30	12	30%
31–40	18	45%
41–55	10	25%
Gender
Female	36	90%
Male	4	10%
Years of Nursing Experience
2–5 years	14	35%
6–10 years	16	40%
> 10 years	10	25%
Educational Background
Diploma in Nursing	8	20%
Bachelor’s Degree	24	60%
Master’s Degree	8	20%
NICU Settings
Setting 1: Academic Medical Center	12	30%
Setting 2: Public Hospital	10	25%
Setting 3: International Teaching Hospital	8	20%
Setting 4: Public Hospital	10	25%

Key themes identified

The analysis yielded seven key themes (Table 2), each aligning with the study’s research objectives and shedding light on the complex emotional, ethical, and professional dimensions of neonatal end-of-life care. Consistent with Interpretative Phenomenological Analysis (IPA) principles, these themes were derived inductively from participants’ accounts, allowing for a holistic exploration of their lived experiences rather than imposing predefined theoretical constructs. Each theme and subthemes is presented with illustrative quotations to offer a nuanced understanding of the nurses’ meaning-making processes and the multifaceted challenges they encounter in neonatal palliative care.

Table 2.

Themes and subthemes generated in this study

Theme	Sub-Themes
(1) Emotional Engagement and Professional Fulfillment	1a. Forming Deep Emotional Bonds 1b. Professional Satisfaction in Providing Comfort
(2) Emotional Challenges and Psychological Impact	2a. Coping with Grief and Loss 2b. Witnessing Family Distress
(3) Navigating Ethical and Moral Dilemmas	3a. Balancing Hope and Realism 3b. Conflicts Between Personal Beliefs and Professional Duties
(4) Compassion in Practice and its Impact	4a. Defining and Integrating Compassion in Daily Care 4b. Enhancing Family Support and Holistic Care Approaches
(5) Challenges in Sustaining Compassion	5a. Compassion Fatigue and Burnout 5b. Maintaining Professional Boundaries
(6) Coping Strategies and Support Systems	6a. Personal Coping and Self-Care Practices 6b. Emotional Resilience and Peer/Institutional Support
(7) Institutional and Cultural Influences on Neonatal Palliative Care	7a. Staffing, Workload, and Training Limitations 7b. Family Expectations, Societal Attitudes, and Cultural/Spiritual Coping 7c. Facilitators: Supportive Leadership and Interdisciplinary Collaboration

Theme 1: Emotional engagement and professional fulfillment

Neonatal palliative care nurses form deep emotional bonds with the neonates they care for, often likening these relationships to parental or familial connections. These attachments shape their professional identity and commitment to compassionate, high-quality care. While these connections provide a strong sense of purpose, they also heighten psychological distress, particularly in cases of neonatal loss. A majority, 85% (34/40), described their caregiving role as emotionally immersive, simultaneously serving as a source of fulfillment and emotional vulnerability.

Sub-theme 1a: Forming deep emotional bonds

A substantial proportion of nurses (80%, 32/40) reported that their relationships with neonates extend beyond routine clinical responsibilities, involving deep emotional and psychological investment. Participants described moments of connection, such as responding to an infant’s small movements, eye contact, or grasping their finger, as profoundly meaningful, reinforcing their commitment to providing comfort and dignity in end-of-life care. One participant articulated this sentiment:

You can’t help but love these little ones. They become like your own children. Every smile, every grasp of your finger touches your heart deeply. (Participant 7, Setting 1).

Nurses reported that small gestures from neonate’s eye contact, a slight movement, or a moment of comfort created powerful emotional connections, reinforcing their commitment to providing attentive, compassionate care:

Sometimes, when a baby smiles or shows even the slightest sign of comfort, it feels like a personal victory. These bonds drive us to give our best care. (Participant 12, Setting 2)

One participant reflected on this emotional toll:

When a neonate passes away, it’s not just a patient; it’s like losing a part of yourself. The emotional weight is immense. (Participant 19, Setting 3)

Sub-theme 1b: Professional satisfaction in providing comfort

Despite the emotional challenges, 78% (31/40) of participants emphasized that their ability to provide comfort to neonates and their families was the most fulfilling aspect of their profession. Nurses described moments of easing a baby’s discomfort or supporting a grieving parent as reaffirming their sense of purpose:

There’s nothing quite like the feeling when you’ve managed to soothe a distressed baby or provide some comfort to a grieving parent. It reminds me why I chose this profession. (Participant 22, Setting 3)

Another participant expressed similar sentiments, emphasizing the emotional gratification derived from seeing families experience a sense of peace despite overwhelming loss:

Seeing a family find some peace, even in such difficult times, gives me a sense of accomplishment and purpose in my work. (Participant 8, Setting 4)

Participants described how the knowledge that their efforts made a tangible difference helped them persevere even in emotionally taxing and morally distressing situations. One nurse articulated this resilience, stating:

Knowing that my efforts make a small difference keeps me going even on the toughest days. (Participant 16, Setting 1)

Theme 2: Emotional challenges and psychological impact

Neonatal end-of-life care exerts a profound emotional toll on nurses, extending beyond their professional roles into their personal lives. Repeated exposure to grief and loss leads to lingering emotional distress, while supporting bereaved families further intensifies their emotional labor. A significant majority, 90% (36/40), reported that these experiences impacted both their professional performance and personal well-being. This theme explores how nurses navigate these challenges, process their grief, and implement coping mechanisms to sustain their emotional resilience amidst the demands of neonatal palliative care.

Sub-theme 2a: Coping with grief and loss

Grieving for deceased neonates was a recurring experience among 85% (34/40) of nurses, many of whom described the loss as deeply personal. Participants explained that neonatal deaths were not momentary events but rather experiences that stayed with them, shaping their perspectives and emotional resilience over time. One nurse reflected on this lasting impact:

Each death stays with you. Sometimes, I find myself thinking about babies we lost years ago, wondering what they might have been like if they had survived. (Participant 15, Setting 2)

Another nurse elaborated on this unresolved emotional burden, explaining how grief continued to affect them beyond the workplace:

It’s not just a job; it’s emotional. The grief can linger long after the event, affecting my personal life. (Participant 21, Setting 1)

Many emphasized the importance of peer support, viewing their colleagues as a crucial source of emotional validation and understanding:

Talking to my colleagues helps me process my feelings. We share our experiences and support each other. (Participant 10, Setting 3)

In addition to interpersonal support, some nurses described engaging in personal rituals of remembrance, such as creating memorials for lost neonates, as a way to honor their memory and process grief:

I find solace in creating small memorials for the babies we’ve lost. It helps me honor their memory and cope with the grief. (Participant 5, Setting 4)

Sub-theme 2b: Witnessing family distress

In addition to personal grief, 80% (32/40) of participants identified witnessing family distress as one of the most emotionally challenging aspects of their role. Nurses frequently described feeling helpless as they observed parents struggle with profound grief, guilt, and emotional devastation. One participant articulated the weight of this experience:

Watching parents say goodbye to their baby … it’s heartbreaking. You want to comfort them, but sometimes you feel helpless in the face of such profound sorrow. (Participant 30, Setting 4)

Another participant described the emotional toll of repeatedly witnessing family distress, explaining how it deepened their own suffering:

The anguish on a family’s face can be overwhelming. It makes the emotional burden of the job even heavier. (Participant 18, Setting 2)

Despite the emotional exhaustion associated with supporting bereaved families, nurses regarded compassionate presence as essential to their professional identity. Many articulated how providing emotional support to grieving families, even in moments where words felt insufficient, was an integral and meaningful part of their work:

Despite the emotional toll, being there for families in their darkest moments feels essential. It’s part of our duty. (Participant 27, Setting 1)

For some nurses, helping families navigate grief was not only a professional responsibility but also a deeply rewarding aspect of their role:

Helping families navigate their grief is one of the most rewarding and challenging parts of my job. (Participant 14, Setting 3)

Theme 3: Navigating ethical and moral dilemmas

Neonatal end-of-life care presents complex ethical and moral dilemmas, requiring nurses to navigate difficult decisions, competing values, and emotional conflicts. Participants highlighted the challenges of balancing honest communication with families, respecting cultural and religious beliefs, and aligning personal values with professional responsibilities. Compassion emerged as a critical guiding principle in addressing these tensions. By focusing on compassionate care, nurses were able to balance clinical realities with family needs, maintain professional integrity, and navigate morally distressing situations. This theme examines the ethical complexities nurses encounter and the strategies they employ to uphold professional integrity while delivering sensitive, family-centered care.

Sub-theme 3a: Balancing hope and realism

Finding the equilibrium between offering families hope and ensuring a realistic understanding of their infant’s prognosis is one of the most challenging aspects of neonatal palliative care. Participants emphasized that while families often clung to hope as a coping mechanism, overly optimistic communication risked fostering unrealistic expectations, whereas excessive realism, especially when delivered abruptly, could intensify despair. Approximately 70% (28/40) of participants highlighted the complexity of these conversations, noting that compassion was central to their communication strategies. Compassionate communication combines honesty with an awareness of families’ emotional needs, helping to foster trust, support informed decision-making, and build emotional resilience. One nurse articulated this delicate balancing act:

It’s a delicate balance. You want to be honest about the severity of the situation, but you also don’t want to extinguish all hope. Finding that equilibrium is one of the hardest parts of our job. (Participant 5, Setting 1)

The need for compassionate communication was particularly emphasized, as nurses recognized that both transparency and sensitivity were essential for maintaining family trust and facilitating informed decision-making. Another participant explained how navigating this dynamic required careful wording and emotional awareness:

Sometimes, giving too much hope can lead to unrealistic expectations, while being overly realistic can dampen the family’s spirit. (Participant 9, Setting 3)

Given the highly emotional nature of neonatal end-of-life care, nurses often had to adjust their communication strategies based on the family’s emotional readiness, ensuring that information was delivered ethically and empathetically. One participant reflected on the importance of maintaining trust in these difficult conversations:

Maintaining trust requires honesty but also sensitivity. Families rely on us to guide them through these difficult decisions. (Participant 11, Setting 2)

Sub-theme 3b: Conflicts between personal beliefs and professional duties

In accordance with Carnevale’s hermeneutic model, ethical dilemmas in neonatal palliative care often involve reconciling familial cultural or spiritual beliefs with clinical recommendations. These conflicts require dialogue and shared decision-making to mitigate moral distress for both nurses and families. Many participants described experiencing internal conflicts when professional duties, such as withdrawing life-sustaining treatment or providing comfort care, challenged their personal or religious convictions. Participants emphasized that institutional policies and cultural norms significantly influenced their ability to provide compassionate care in such scenarios. While supportive frameworks, such as ethical consultations and leadership engagement, helped align professional responsibilities with personal values, cultural and familial expectations often complicated decision-making. Nurses highlighted compassion as a critical tool for fostering open dialogue and mutual understanding, enabling them to navigate these tensions while maintaining sensitivity and professionalism.

One nurse reflected on the emotional weight of these conflicts:

There are times when the medical decisions don’t align with what I personally feel is right. It’s a struggle to set aside your own feelings and focus on what’s best for the patient and family. (Participant 18, Setting 2)

Another participant expressed the emotional weight of these dilemmas, noting how following institutional protocols sometimes felt personally challenging:

My personal beliefs sometimes clash with the protocols we have to follow. It creates an internal conflict that can be hard to manage. (Participant 24, Setting 1)

To navigate these ethical tensions, nurses often relied on open discussions with colleagues, ethical consultations, and professional support networks. These strategies helped them process moral distress and align their decisions with both professional integrity and ethical best practices. One participant described the value of team discussions in resolving ethical uncertainty:

When faced with these dilemmas, discussing them with my team and seeking ethical guidance helps me navigate my responsibilities. (Participant 33, Setting 4)

Additionally, ethical consultation services were seen as essential tools for clarifying decision-making frameworks and ensuring that both professional standards and personal values were respected:

Ethical consultations provide a framework for making decisions that respect both professional standards and personal values. (Participant 12, Setting 3)

Theme 4: Compassion in practice and its impact

Compassion, as a deliberate and active practice, is central to neonatal palliative care, influencing both the quality of care and the emotional well-being of families and caregivers. Compassion extends beyond emotional empathy; it requires intentional actions that create an environment of trust, comfort, and dignity. Eighty percent (32/40) of participants emphasized that their compassionate approach was not merely a reaction to distress but an integral component of their professional identity, shaping how they navigated the challenges of end-of-life care. Participants described compassion as the foundation of effective communication, emotional support, and holistic care, reinforcing their role as both caregivers and advocates for neonates and their families.

Sub-theme 4a: Defining and integrating compassion in daily care

Seventy-five percent (30/40) of nurses highlighted that compassion in neonatal palliative care is not just an emotional disposition but a set of intentional behaviors that shape daily interactions. While nurses often describe empathetic and kind acts, compassion here is understood as an intentional effort to recognize another’s suffering and actively work to alleviate it. This distinction highlights the deliberate practices that extend beyond general sympathy. These behaviors include gentle handling, soothing verbal communication, and the proactive involvement of families in decision-making. Many participants described how these small but significant acts helped to establish a sense of trust and reassurance, reducing distress for both neonates and their families. One participant emphasized the importance of compassionate presence:

It’s in the little things, the way you speak softly and the gentle touch you use, that show true compassion and build trust. (Participant 25, Setting 4)

Participants stressed that compassion requires attentiveness to non-verbal cues, ensuring that both neonates and families feel valued and supported. Another nurse reflected on how a seemingly simple gesture, such as holding a baby’s hand or offering a reassuring presence to a grieving parent, could have a profound impact:

Even when words aren’t enough, just being there, holding a baby’s tiny hand, and giving a family a moment of silence to grieve are the moments when compassion matters the most. (Participant 18, Setting 3)

Compassion was also described as a protective factor against the emotional toll of neonatal palliative care. Nurses expressed that by actively practicing compassion, they found purpose and resilience in their roles despite the emotional burden of witnessing neonatal loss. One nurse articulated how integrating compassion into practice helped maintain her professional fulfillment:

When I remind myself why I do this work and why compassion is so crucial, it keeps me going, even on the hardest days. (Participant 9, Setting 1)

These narratives underscore that compassion in neonatal palliative care is not passive but an active, conscious effort that enhances both caregiving and emotional endurance.

Sub-theme 4b: Enhancing family support and holistic care approaches

Sixty-five percent (26/40) of participants emphasized that compassionate care extends beyond the neonate to provide holistic support to families, acknowledging their grief, concerns, and need for emotional security. Participants described how families who felt genuinely cared for were more likely to engage in the care process, trust medical decisions, and find moments of peace in an otherwise distressing experience. One participant explained how compassion fosters family trust:

When families feel that you genuinely care, they are more likely to engage in the care process and trust the decisions made, which is crucial during such vulnerable times. (Participant 14, Setting 2)

Many participants reported that families relied on nurses for both clinical guidance and emotional reassurance. This dual role required nurses to balance medical responsibilities with empathetic communication, ensuring that families felt included and supported throughout the palliative care process. One nurse described the importance of providing compassionate explanations to families:

Families look to us for answers, but more importantly, they look to us for comfort. Compassionate communication makes the hardest conversations just a little easier. (Participant 22, Setting 3)

Participants also highlighted that holistic, compassionate care includes respecting cultural and spiritual beliefs. Several nurses described instances where acknowledging a family’s religious or cultural traditions created a more meaningful end-of-life experience:

Sometimes, compassion is respecting a family’s cultural beliefs, giving them space to pray, or allowing them time to hold their baby in their own way. These moments matter. (Participant 30, Setting 4)

This theme underscores that compassion is not only an individual trait but an essential nursing practice that enhances patient outcomes, strengthens nurse-family relationships, and contributes to a more holistic approach to neonatal end-of-life care.

Theme 5: Challenges in sustaining compassion

Sustaining compassion in the face of continuous emotional stress emerged as a central challenge in neonatal palliative care. Seventy percent (28/40) of participants reported that the relentless exposure to neonatal loss and family distress depleted their emotional reserves, making it difficult to maintain emotional engagement over time. Despite these challenges, compassion remained integral to their professional identity. Participants highlighted the need for deliberate strategies, including personal resilience, institutional support, and culturally sensitive practices, to navigate the emotional demands of their work effectively.

Sub-theme 5a: Compassion fatigue and burnout

Sixty-five percent (26/40) of nurses reported experiencing compassion fatigue, characterized by chronic emotional exhaustion due to repeated exposure to neonatal death. High patient-to-nurse ratios, inadequate staffing, and limited emotional support systems were identified as key contributors. Cultural norms, such as societal expectations to “fight until the end,” further compounded the emotional toll.

One participant observed:

After several losses in a short period, it becomes almost impossible to summon that same level of compassion; you simply feel drained. (Participant 20, Setting 3)

Another participant elaborated on the cumulative impact of these losses, stating,

Every time a baby passes away, it chips away at you. There’s an overwhelming sense of emptiness that builds up, and eventually, you just feel burnt out. (Participant 17, Setting 2)

These accounts underscore that the persistent depletion of emotional energy not only jeopardizes personal well-being but also risks compromising the quality of care provided.

Sub-theme 5b: Holistic care approaches

Sixty percent (24/40) of respondents highlighted the challenge of maintaining professional engagement while protecting their emotional well-being. To sustain compassion, participants emphasized the importance of mindfulness practices, structured peer support, and regular counseling sessions. They also stressed the need for interdisciplinary collaboration and fostering a workplace culture that prioritizes emotional well-being. Additionally, nurses identified cultural competence, recognizing and respecting families’ beliefs and practices, as a key factor in maintaining emotional engagement without depleting their reserves. One nurse explained,

There’s a constant tension between being fully present for the families and protecting your own emotional health; it’s a fine line that is hard to maintain. (Participant 28, Setting 4)

In addition, another nurse described the challenge of detaching without losing empathy:

Sometimes, I worry that if I pull back too much to protect myself, I might become detached and unable to provide the compassionate care that my patients need. (Participant 23, Setting 2)

Theme 6: Coping strategies and support systems

A significant majority, 85% (34/40) of neonatal palliative care nurses, highlighted the importance of personal and external coping mechanisms in managing their work’s emotional and psychological burdens. The ability to navigate the challenges of neonatal end-of-life care is not solely dependent on personal resilience; rather, it requires a multifaceted approach incorporating self-care strategies, peer support, and institutional resources. This theme explores the adaptive mechanisms that enable nurses to sustain their emotional well-being and maintain their capacity for compassionate care.

Sub-theme 6a: Personal coping and self-care practices

Eighty percent (32/40) of participants identified personal coping strategies as essential in managing the emotional intensity of their roles. These strategies included reflective journaling, mindfulness, spiritual practices, and regular physical exercise. One participant emphasized how journaling provided a structured way to process difficult experiences:

I keep a journal to process my experiences, which is an essential tool that helps me understand and manage my emotions daily. (Participant 3, Setting 1)

Another nurse described the therapeutic value of mindfulness and relaxation techniques in alleviating stress:

I practice deep breathing and mindfulness before and after every shift. It helps me reset emotionally so I can handle the next day without carrying the weight of previous losses. (Participant 12, Setting 2)

For some nurses, engaging in physical activities such as walking, yoga, or exercise served as a release from the intense emotions associated with their work. One participant shared:

Running has become my escape. It’s the one place where I can clear my mind and separate myself from the sorrow I see daily. (Participant 29, Setting 3)

Additionally, spiritual practices, including prayer and meditation, were frequently cited as sources of emotional strength. One nurse noted:

Whenever I feel overwhelmed, I take a moment to pray. It reminds me of my purpose and gives me the strength to continue providing care with compassion. (Participant 18, Setting 4)

Sub-theme 6b: Emotional resilience and peer/institutional support

Seventy-five percent (30/40) of nurses stressed the significance of peer support and institutional interventions in fostering emotional resilience. Many described their colleagues as an indispensable source of comfort, validation, and guidance. One participant explained:

My team is my lifeline. Debriefing with colleagues and accessing institutional counseling services are indispensable for coping with the constant emotional demands. (Participant 36, Setting 4)

Another nurse highlighted the importance of informal peer support:

Sometimes, just having someone who understands who has been through the same experiences makes all the difference. We lean on each other in ways that outsiders can’t fully grasp. (Participant 21, Setting 2)

Structured institutional support mechanisms, such as counseling programs, debriefing sessions, and mental health services, were also identified as critical tools for sustaining emotional resilience. One participant described how access to professional counseling improved their ability to manage stress:

The counseling sessions provided by the hospital have helped me healthily process my grief. It has prevented me from carrying too much emotional burden alone. (Participant 14, Setting 1)

Despite the benefits of these resources, some nurses noted barriers to accessing them, including time constraints and perceived stigma around seeking mental health support. One participant remarked:

The support services are there, but sometimes the workload is so overwhelming that we don’t have time to use them. And honestly, some nurses feel embarrassed to admit they need help.” (Participant 26, Setting 3)

To address these challenges, participants emphasized the need for proactive institutional policies that normalize and integrate emotional support into routine practice. One nurse suggested:

Hospitals should incorporate emotional resilience training into their professional development programs. We need to be equipped with tools that allow us to process grief healthily. (Participant 9, Setting 4)

Theme 7: Institutional and cultural influences on neonatal palliative care

Ninety percent (36/40) of participants emphasized that neonatal palliative care is significantly shaped by external influences, including institutional constraints, societal attitudes, and cultural norms. These factors not only affect the feasibility of providing compassionate and individualized care but also influence nurses’ emotional resilience and coping strategies. High patient loads, limited specialized training, and inadequate staffing often force nurses to work under suboptimal conditions, while cultural beliefs and societal expectations complicate the acceptance and implementation of palliative care. Despite these challenges, participants identified supportive leadership and interdisciplinary collaboration as key facilitators in maintaining both care quality and compassionate practice.

Sub-theme 7a: Staffing, workload, and training limitations

Eighty-five percent (34/40) of nurses identified high patient-to-nurse ratios, excessive workloads, and a lack of specialized training as major barriers to delivering high-quality neonatal palliative care. These constraints reduced their capacity to provide the emotional presence and individualized attention essential to compassionate care. Participants stressed that without systemic reforms, the emotional burden of neonatal palliative care would remain unsustainable. They advocated for structured institutional interventions, including mandatory debriefing sessions, resilience training, and workload policies designed to preserve nurses’ emotional well-being and sustain compassionate care over time.

One nurse expressed frustration with the overwhelming workload:

When you’re stretched so thin, it’s nearly impossible to give each baby and family the attention they deserve. You want to be there emotionally, but you don’t have the time. (Participant 31, Setting 4)

Another participant highlighted the impact of understaffing on both professional burnout and care quality:

Some days, I barely have time to sit with grieving families because I’m responsible for multiple critically ill neonates at once. It’s exhausting and doesn’t feel fair to the babies or parents. (Participant 8, Setting 2)

In addition to staffing shortages, many nurses described a lack of structured palliative care training as a critical gap in their professional development. One participant noted:

We learn how to save lives, but very little is taught about how to provide palliative care or communicate with grieving families. We are often left to figure it out on our own. (Participant 14, Setting 3)

Sub-theme 7b: Family expectations, societal attitudes, and cultural/spiritual coping

Eighty percent (32/40) of nurses reported that cultural and societal factors significantly shape family expectations and the acceptability of neonatal palliative care. Many families, influenced by religious beliefs and cultural stigmas surrounding death, were reluctant to accept palliative interventions. To navigate these challenges, nurses adapted their approach while maintaining ethical and professional integrity. Strategies included using culturally sensitive language, involving religious leaders in discussions, and offering spiritual support tailored to families’ beliefs. Participants emphasized that integrating cultural competence into palliative care training is essential for sustaining compassion in diverse healthcare settings.

One nurse described the difficulty of initiating end-of-life discussions with families:

Deeply rooted cultural beliefs often make families resistant to palliative care discussions; navigating these sensitivities requires extraordinary tact. (Participant 27, Setting 3)

Another participant shared how societal attitudes toward neonatal death complicated the grieving process:

Many families see withdrawing life support as ‘giving up’ rather than allowing the baby to pass peacefully. They feel like they have to fight until the very last second. (Participant 10, Setting 1)

Nurses also highlighted how their own cultural and spiritual backgrounds influenced their coping mechanisms. One participant reflected:

Faith helps me process the losses I experience in this job. It allows me to believe I did everything possible, even when the outcome isn’t what we hoped for. (Participant 19, Setting 2)

To navigate these complexities, nurses emphasized the importance of culturally sensitive communication, family-centered care approaches, and institutional support in facilitating difficult conversations about palliative care.

Sub-theme 7c: Facilitators: supportive leadership and interdisciplinary collaboration

Seventy percent (28/40) of nurses identified supportive leadership and interdisciplinary teamwork as essential in overcoming institutional barriers and enhancing neonatal palliative care. Leadership that demonstrated active engagement, emotional support, and resource provision significantly improved job satisfaction and care quality. Participants emphasized that institutional support must extend beyond resource allocation to actively cultivate a culture that values and protects compassionate caregiving. They highlighted leadership training in emotional resilience, interdisciplinary collaboration in ethical decision-making, and hospital-wide initiatives to normalize discussions on grief and compassion as critical for sustaining high-quality neonatal palliative care.

One participant emphasized the role of strong leadership in fostering a compassionate work environment:

Supportive leadership not only provides us with the necessary resources but also creates an environment where compassionate care can truly thrive. (Participant 24, Setting 1)

Another nurse explained how having accessible supervisors made a tangible difference:

When management listens to us and acknowledges our emotional struggles, it validates our experiences and makes us feel valued. (Participant 15, Setting 3)

Beyond leadership, nurses also underscored the importance of interdisciplinary collaboration in ensuring comprehensive palliative care. Working alongside physicians, social workers, and chaplains was seen as a crucial component of holistic care delivery. One participant noted:

Having a team approach allows us to share the burden. Physicians, psychologists, and nurses all play a role in helping families make informed and compassionate decisions. (Participant 22, Setting 4)

Summary of findings

Table 2 summarizes the seven interrelated themes and subthemes derived from our analysis of neonatal palliative care nurses’ experiences. Figure 1, titled “Integrated Conceptual Framework of Key Themes in Neonatal Palliative Care,” visually represents the dynamic relationships among these themes. The framework illustrates that the profound emotional bonds formed with neonates (Theme 1) contribute to both professional fulfillment and increased psychological distress (Theme 2), which in turn accentuate the ethical dilemmas (Theme 3) nurses face in balancing clinical realities with family expectations and personal values. Intentional, active compassion (Theme 4) emerges as a central mechanism that both alleviates and complicates these challenges, while the struggle to sustain compassion over time (Theme 5) necessitates robust personal and institutional coping strategies (Theme 6). These efforts are framed within the broader context of institutional and cultural influences (Theme 7), which shape the overall feasibility and effectiveness of neonatal palliative care.

Fig. 1.

Integrated conceptual framework of key themes in neonatal palliative care

Discussion

This study offers a nuanced phenomenological exploration of neonatal palliative care nursing in Egypt, revealing the interplay between emotional engagement, ethical dilemmas, institutional challenges, and cultural influences. By employing an Interpretative Phenomenological Analysis (IPA) framework, this research provides an in-depth account of nurses’ lived experiences, extending theoretical insights into compassion, grief, moral distress, and professional resilience in neonatal end-of-life care. The findings highlight how nurses navigate deep emotional bonds with neonates, manage the psychological burden of loss, confront ethical conflicts, and sustain compassionate practice within resource-constrained institutional settings. These insights directly address the study’s core objectives by examining the mechanisms through which nurses maintain compassion despite profound emotional, ethical, and systemic challenges and by elucidating the coping strategies they employ within the broader cultural and institutional landscape. Furthermore, the study contributes to the growing body of literature on compassion fatigue, secondary trauma, and resilience in palliative nursing, emphasizing the critical need for structural interventions, ethical support frameworks, and culturally responsive care models.

Emotional engagement and professional fulfillment

Nurses in this study described forming profound emotional bonds with neonates, often equating their relationships with parental-like attachment. This emotional connection was both fulfilling and distressing, reinforcing the paradox of professional caregiving. The concept of “compassion satisfaction” emerged as a central theme, aligning with studies emphasizing the emotional rewards of alleviating suffering [87, 88]. Nurses found meaning in providing comfort, reinforcing the role of emotional engagement as a motivator for continued compassionate care. However, this engagement also blurred professional boundaries, increasing emotional vulnerability and distress when neonates passed away [89]. The results underscore the necessity of structured interventions such as debriefing sessions, formal grief counseling, and resilience training are essential to safeguard nurses’ well-being. These measures can help mitigate compassion fatigue, support emotional processing, and sustain nurses’ ability to deliver high-quality, compassionate care without long-term psychological strain [90].

Emotional challenges and psychological impact

Neonatal loss exerted a profound emotional toll on nurses, affecting both their professional and personal well-being. Participants described lingering grief, persistent memories of deceased neonates, and the difficulty of maintaining emotional resilience. The emotional burden often extended beyond the workplace, with some nurses recounting vivid recollections of past losses that continued to affect them. Witnessing parental grief further compounded their distress, as they often felt helpless in the face of families’ sorrow, guilt, and emotional suffering. This cumulative emotional strain aligns with the concept of secondary trauma [91], where in repeated exposure to neonatal death leads to lasting psychological effects [92]. Many nurses struggled to maintain emotional detachment, acknowledging that the deeply personal nature of neonatal care made distancing from grief nearly impossible. While some turned to spiritual practices or personal reflection, others relied on peer support and informal debriefing with colleagues to process their emotions.

These coping mechanisms provided temporary relief, yet institutionalized grief support structures remained largely absent, leaving many nurses without formal avenues to address their emotional distress [93]. Despite these challenges, participants underscored the importance of providing compassionate support to families, viewing their role as both medical caregivers and emotional anchors. Strategies such as active listening, offering a calm presence, and providing emotional reassurance were frequently employed to support grieving parents. However, the heavy emotional demands of this role, coupled with high workloads, often limited nurses’ ability to provide sustained emotional care [94]. These findings highlight the urgent need for structured bereavement support programs, training in bereavement communication, and adjustments to nurse-patient ratios to enable nurses to provide compassionate care without compromising their own psychological well-being [18].

Navigating ethical and moral dilemmas

Ethical dilemmas are not merely moral conflicts but moments where compassion serves as a guiding principle, enabling nurses to balance clinical realities with family needs [95] Participants described the difficulty of maintaining honesty while respecting cultural and religious beliefs that often emphasized miracles and divine intervention. This aligns with Carnevale’s hermeneutic approach to ethical decision-making [84], which emphasizes the need for contextualized ethical reasoning. Additionally, conflicts between nurses’ personal beliefs and professional obligations emerged as a significant theme. For some, participating in end-of-life decision-making felt contradictory to their values, underscoring the importance of ethical training and interdisciplinary support in mitigating moral distress. These findings underscore the moral complexity of truth-telling in palliative care, where the delivery of information can significantly impact parental coping, decision-making, and grief processing. Nurses often found themselves acting as mediators between medical teams and families, reinforcing the need for communication training and institutional guidelines that help practitioners navigate these delicate ethical interactions [96] Reliance on ethical dialogue, institutional policies, and collaborative decision-making is crucial in mitigating moral distress and sustaining compassionate nursing practice [97]. Addressing cultural and institutional barriers to compassionate care is therefore essential to supporting nurses in this demanding context [98].

Compassion in practice and its impact

Compassion emerges as the cornerstone of neonatal palliative care, guiding nurses through the emotional and ethical challenges of end-of-life care [99]. Compassion was described as an intentional, active practice rather than a passive emotional response. Participants highlighted the importance of small, meaningful gestures such as gentle touch, soft-spoken words, and presence as essential components of compassionate neonatal care. These findings align with research emphasizing the need for deliberate, sustained, compassionate practices in palliative settings with prioritized training in compassionate communication and holistic palliative care to ensure that both families and healthcare providers receive the support necessary to navigate neonatal loss with dignity and care [16, 100].

Defining and integrating compassion in daily care

Participants described compassion as integral to their professional identity, shaping their interactions with neonates and families. Acts such as ensuring neonates’ comfort, engaging in soothing communication, and acknowledging parents’ emotions were central to their practice. Compassion was framed as an active process requiring attentiveness to the needs of neonates and their families rather than merely an empathetic reaction. Many participants emphasized that fostering an environment of warmth and emotional support helped families cope with the distress of neonatal end-of-life care, aligning with studies highlighting the tangible impacts of compassionate care on patient and family outcomes [101, 102]. This emphasis on compassion naturally extends to interactions with families, reinforcing the critical role of family-centered care in neonatal palliative settings.

Enhancing family support and holistic care approaches

Family-centered care emerged as a crucial component of compassionate nursing practice, reinforcing the role of nurses as both caregivers and emotional supporters. Participants described strategies such as involving parents in caregiving decisions, creating opportunities for bonding before a neonatal loss, and providing a reassuring presence during difficult moments. These approaches enhanced parental coping and strengthened the nurse-family relationship. However, institutional constraints, such as high workloads and staffing shortages, often limit nurses’ ability to provide holistic emotional support. Many participants expressed frustration that their ability to deliver sustained compassionate care was hindered by time pressures and the lack of formalized emotional support structures. Sustaining compassion over time proved challenging, necessitating both personal resilience and institutional mechanisms, such as workload redistribution and structured support programs, to prevent burnout. These findings reinforce the need for institutional policies that facilitate family engagement and equip nurses with the necessary resources to sustain compassionate care while addressing systemic barriers [103].

Challenges in sustaining compassion

The emotional intensity of neonatal palliative care often led to compassion fatigue and burnout, with participants describing the toll of repeated exposure to grief, compounded by high workloads and inadequate institutional support. Despite these challenges, participants described various strategies they employed to sustain their capacity for compassionate care, including emotional regulation techniques, peer support, and reframing distressing experiences. Many struggled to balance professional detachment with emotional engagement, recognizing that emotional withdrawal, while a protective mechanism, could also diminish the quality of care. These findings align with existing literature on the need for self-care and resilience training to sustain compassion. Institutional interventions, such as formal debriefing programs, structured support groups, and workload redistribution, are critical in supporting nurses’ emotional resilience [53, 104]. Such measures help mitigate the cumulative emotional burden nurses face, ensuring they receive consistent psychological support and fostering a workplace culture that prioritizes emotional well-being. Addressing these structural gaps is essential to prevent burnout and enable nurses to continue delivering compassionate neonatal palliative care [105].

Coping strategies and support systems

Participants employed a variety of coping strategies to manage the psychological demands of neonatal palliative care. These strategies were essential in allowing nurses to continue delivering compassionate care despite the emotional strain of their work. Personal coping mechanisms included mindfulness, journaling, prayer, and reflective practice, aligning with cognitive reappraisal theories [106]. Peer support emerged as the most effective external coping strategy, with nurses relying on colleagues for emotional validation and guidance. Participants emphasized that shared experiences with colleagues provided not only emotional validation but also practical coping advice, reducing feelings of isolation and distress. However, institutional support was often insufficient, with many participants citing a lack of formal counseling services or structured resilience programs. Addressing these gaps through evidence-based interventions, such as peer mentorship programs and accessible mental health resources, could enhance nurses’ ability to navigate their roles sustainably. Institutions should prioritize structured emotional debriefing sessions, ongoing resilience training, and policies that promote a psychologically supportive work environment. Creating a culture where seeking mental health support is normalized could significantly reduce burnout and improve long-term well-being [53].

Institutional and cultural influences on neonatal palliative care

Staffing, workload, and training limitations

Institutional constraints, including staffing shortages, high workloads, and insufficient palliative care training, significantly influenced nurses’ experiences. Many participants expressed frustration that their overwhelming workload limited their ability to provide individualized, compassionate end-of-life care. High nurse-to-patient ratios often forced nurses to divide their attention between critically ill neonates and grieving families, reducing the depth of emotional support they could offer. Additionally, a lack of specialized education in neonatal palliative care left many feeling ill-equipped to navigate complex ethical dilemmas, bereavement support, and emotional resilience. These findings align with prior research highlighting the impact of staffing limitations and inadequate training on both care quality and nurse well-being [107, 108]Addressing these systemic barriers through staffing reforms, palliative care training, and institutional policies that prioritize emotional well-being is critical to improving neonatal palliative care delivery.

Family expectations, societal attitudes, and cultural/spiritual coping

Many families struggled to accept the concept of palliative care, often viewing the withdrawal of life-sustaining treatments as giving up on their child rather than an act of compassionate care [109, 110]. Participants described employing culturally sensitive communication strategies to navigate these challenges, emphasizing the importance of respecting families’ beliefs while providing realistic yet compassionate guidance. However, many nurses noted that institutional support in managing these complex interactions was limited or inconsistent. Given these complexities, comprehensive cultural competence training and institutional guidelines on culturally sensitive communication are essential in helping nurses navigate the intersection of medical ethics and family expectations. Incorporating spiritual care providers and interdisciplinary teams into neonatal palliative care can further bridge the gap between medical realities and cultural values, ensuring that families receive support that respects their beliefs while maintaining ethical care practices.

Facilitators: supportive leadership and interdisciplinary collaboration

Despite these challenges, supportive leadership and interdisciplinary collaboration emerged as key facilitators in improving neonatal palliative care. Nurses reported that hospitals with engaged leadership that prioritized emotional support, ethical consultation, and staff well-being created a more conducive environment for high-quality end-of-life care. Encouragement from supervisors and structured debriefing sessions helped nurses process grief and maintain emotional resilience. Additionally, collaborating with physicians, social workers, and chaplains enhanced the ability to provide holistic, family-centered care. Participants emphasized that working alongside other healthcare professionals helped align medical best practices with the cultural and spiritual needs of families. These findings highlight the urgent need for structured institutional interventions, including mandatory palliative care training, routine psychological support for nurses, and workload adjustments that facilitate sustained compassionate care [111]. Future research should explore the implementation and effectiveness of these interventions to enhance nurse well-being and improve palliative care delivery [112].

Theoretical insights in context

Our phenomenological analysis revealed patterns that aligned with established theoretical frameworks, particularly regarding stress, coping, and emotional regulation in healthcare settings. Participants’ experiences demonstrated clear connections to Lazarus and Folkman’s (1987) Transactional Model of Stress and Coping [113], evidenced through their sophisticated appraisal processes in end-of-life care situations. Their narratives exhibited both primary appraisals of situational demands (“When faced with a critical situation, I assess how serious it is” - Participant 11, Setting 1) and secondary appraisals of coping resources (“I think about whether I have the skills and support to handle what’s happening” - Participant 21, Setting 2), directly influencing their choice of coping strategies. Emotional regulation strategies aligned with Lazarus’s (1991) Cognitive Appraisal Theory [106], as nurses employed cognitive reframing and mindfulness techniques to manage their emotional responses while maintaining compassionate care. The Egyptian cultural and religious context added unique dimensions to these theoretical frameworks, particularly in how nurses appraised situations and selected coping mechanisms [6].

The integration of Lazarus and Folkman’s model was particularly relevant in our study due to the unique cultural and institutional factors influencing neonatal palliative care nurses’ emotional regulation in an Egyptian context. Given the significant role of cultural expectations in shaping coping mechanisms, our findings highlight how nurses navigate stress appraisal processes within a framework influenced by professional duty, religious beliefs, and societal expectations surrounding neonatal end-of-life care. This interplay underscores the importance of culturally responsive interventions that align with nurses’ existing coping resources while addressing emotional exhaustion and ethical tensions inherent in neonatal palliative care. The cultural emphasis on life preservation intensified emotional experiences during end-of-life care, while religious practices served as primary coping mechanisms [114, 115]. Compassion emerged as both a professional imperative and a culturally-driven practice, influencing how nurses evaluated their caregiving responsibilities and chose coping strategies. These theoretical perspectives illuminate the interplay between cognitive appraisal, emotional response, and coping strategies while remaining grounded in the phenomenological essence of nurses’ lived experiences rather than directing our analysis.

Limitations

Several methodological considerations warrant acknowledgment when interpreting this study’s findings. The geographical scope, limited to NICUs within a single Egyptian region, means that the findings are context-specific and reflective of this particular healthcare setting. However, a key strength of this study is the rich, in-depth data it provides, offering valuable insights into neonatal care in the Middle Eastern context. While our sample size (N = 40) achieved data saturation and met IPA requirements, a broader multi-regional sample could have captured additional cultural and institutional nuances in neonatal palliative care. Although combining interviews and reflective journals enhanced methodological triangulation, variability in journaling consistency among participants posed analytical challenges. A longer and more structured journaling period could have provided deeper insights into nurses’ evolving experiences. Additionally, self-selection bias from voluntary participation may have overrepresented nurses comfortable discussing end-of-life care emotions, potentially limiting perspectives from those experiencing higher distress or workplace constraints. Translation challenges between Arabic and English, despite rigorous back-translation procedures and cultural validation, may have attenuated subtle cultural meanings. Finally, variations in institutional resources and policies across NICU settings introduced variables that could not be fully separated from individual and cultural factors. Future research should adopt a multi-regional design, incorporate extended observation periods, and establish standardized journaling protocols to enhance data richness and generalizability across diverse neonatal palliative care settings. Expanding research to multiple regions with varied institutional contexts could further illuminate the complex interplay of cultural, ethical, and institutional factors in neonatal end-of-life care.

Conclusion

This study provides a comprehensive exploration of the lived experiences of neonatal palliative care nurses, emphasizing the emotional, ethical, and institutional challenges that shape their practice. It uniquely highlights the dual nature of emotional engagement; while nurses find fulfillment in providing compassionate care, they also experience significant psychological distress due to repeated neonatal loss. The findings add to the literature by illustrating how ethical dilemmas, cultural expectations, and institutional constraints influence end-of-life decision-making and the provision of compassionate care. To enhance both nurse well-being and neonatal palliative care quality, targeted institutional interventions are essential. These include ethical training, bereavement support programs, interdisciplinary collaboration, and culturally responsive policies that equip nurses with the tools needed to navigate emotional and ethical challenges.

Author contributions

All authors made significant contributions to this study. O.M.E.R. conceived and designed the study, performed data analysis, and drafted the manuscript. N.I.M.B., N.E.K., and N.M.A. were responsible for data collection and contributed to data interpretation. N.B.E. and E.M.A. contributed to data collection and assisted in manuscript revision. N.A.M. supported data collection and data interpretation. A.H.H. provided critical revisions, contributed to the study design, and assisted in data analysis. All authors reviewed and approved the final manuscript.

Funding

No financial or non-financial support has been received from any party with direct or indirect connections to the subject of this article.

Data availability

The datasets produced and analyzed during this study can be obtained from the corresponding author upon reasonable request.

Declarations

Institutional review board statement

The study received ethical clearance from the Ethical Committee of the Faculty of Nursing at Tanta University under approval number 526-9-2024.

Informed consent statement

Informed written consent was secured from all participants before their involvement in the study, ensuring they were fully informed about the study’s objectives, procedures, and their right to withdraw at any point.

Consent for publication

Not applicable.

Clinical trial number

Not applicable.

Conflicts of interest

The authors declare that they have no competing interests.