Nurses, Parents and Educators Map Skills Needed to Care for Dying Children

When a child is dying, the nurse at the bedside may be the person who decides how much truth a shattered family can absorb, when to sit down and listen for an hour, and how to keep a monitor alarm from drowning out a final prayer. A qualitative study conducted in Iran has now set out, in unusually systematic detail, what nurses, supervisors, educators and bereaved parents believe a nurse must be able to do during those final days and weeks. The research, published in Nursing Open, distilled interviews with 17 stakeholders into six competency categories and 17 subcategories, all gathered under one overarching theme: providing comprehensive and ethically oriented care for the child and family at the end of life.

The study team used conventional qualitative content analysis, following Graneheim and Lundman’s method, on semi-structured interviews carried out between 1 April and 30 June 2025 in a tertiary paediatric referral teaching hospital and an affiliated nursing faculty in a metropolitan region. Participants were recruited through purposive sampling with maximum variation across clinical departments, including the paediatric intensive care unit, oncology and internal wards, as well as across years of experience and professional roles. The final sample comprised 10 clinical bedside nurses, two nursing supervisors, three nursing faculty members and two bereaved mothers. Interviews lasted 35 to 75 minutes, with a mean of 52 minutes, and continued until code saturation was reached within the professional cohort by the 13th interview; the two parent interviews were retained for triangulation rather than independent subgroup saturation.

The analytical machinery behind the findings was substantial. The researchers generated approximately 580 initial codes, which were condensed through constant comparison into the 17 subcategories and six main categories. Three early transcripts were independently coded by a second researcher, disagreements were resolved by returning to raw transcripts and audio recordings in bi-weekly meetings, and two external qualitative researchers conducted a peer-debriefing review with access to the coding framework, the audit trail and three full anonymized transcripts. Transcripts were returned to six participants to verify transcription fidelity, and a summary of preliminary codes and categories was shared with four participants as true member checking. Primary data collection and analysis were conducted in Persian, with a forward-backward translation procedure applied to the illustrative quotes published in English.

The first competency category concerns ethical and empathetic communication. Participants described truth-telling as a calibrated act: a PICU nurse explained that a nurse must assess a family’s readiness, sit down with them, choose compassionate words and know exactly how, when and how much to share in each conversation, so that harsh clinical realities are not dropped abruptly. A bereaved mother recalled that having a nurse explain test results gently, without cold medical terms, helped her family face reality without losing all their strength. A second subcategory covers conflict-resolution skills for managing family expectations; a nursing supervisor described experienced nurses calmly explaining physiological realities and the purpose of comfort care to parents who demand continuous aggressive resuscitation because stopping feels like giving up on their child. The third subcategory, emotional empathy and active listening, was illustrated by a mother whose nurse took her and her husband into a private room after doctors said no further curative treatment was possible, held her hand and listened to their fears for nearly an hour without rushing them.

Physical care emerged as the second category, oriented not merely at symptom control but at the child’s remaining quality of life. Participants emphasized continuous rather than intermittent symptom assessment; one supervisor described constantly reading breathing patterns, skin breakdown and facial tension so that pain and symptom protocols are adjusted before the child experiences overt suffering. Non-pharmacological comfort interventions formed a distinct skill set: a faculty member described how elevating the head of the bed, using specialized gel cushions or applying cool cloths can significantly relieve respiratory distress and agitation in terminal stages, calling these measures bedside comfort arts that nurses must master. Educational skills for family empowerment completed the category, with a clinical nurse describing bedside training in which mothers learn to read non-verbal pain cues, position the child safely to prevent aspiration and manage breakthrough pain medications, giving them a sense of meaningful contribution in their child’s final days.

Psychological care and bereavement support constituted the third category, extending care beyond the child’s death. Nurses described providing psychological reassurance to parents burdened by guilt, validating their caregiving efforts and guiding them through deep breathing and grounding techniques during acute panic. Bereavement care was framed as continuing after the cardiac monitor stops: a supervisor described maintaining a serene environment, helping parents hold or bathe their child a last time if they wish, and listening without clichéd platitudes. One bereaved mother said the nurses wrapped her deceased child tenderly and stayed while the family wept, an image she credited with immense comfort in the darkest hours. The category also includes clinical judgement about professional boundaries, with nurses describing prompt referral to clinical psychologists or social work teams when families show severe depressive withdrawal, trauma responses or relationship breakdown.

Cultural and spiritual care appeared as an independent, foundational category rather than an adjunct. Participants described encouraging parents to recite sacred texts, play quiet recitations or perform traditional prayers beside the child while ensuring clinical activities do not intrude on those moments. Nurses also described tailoring care plans to families’ religio-cultural beliefs, modesty traditions and taboos, and navigating prognostic communication carefully, since in some cultural settings a direct pronouncement of imminent death is perceived as extinguishing spiritual hope. A faculty member explained that competent nurses use nuanced, culturally sensitive language that conveys clinical reality while respecting the family’s faith in spiritual healing. The third subcategory covers targeted referrals to hospital chaplains, religious counsellors or spiritual support groups, coordinated within the interdisciplinary team when parents ask existential questions such as why God is letting their child suffer.

Ethical and advanced clinical decision-making formed the fifth category. Participants were clear that legal authority for decisions such as do-not-resuscitate orders or treatment limitation rests with physicians and legal guardians, while nurses prepare families emotionally and cognitively, translate dense medical terminology into understandable language and bridge communication between family and medical team. A PICU nurse described the moral distress of performing chest compressions and aggressive interventions on a child with terminal, irreversible multi-organ failure, and argued that competent nurses need ethical reasoning to advocate for palliative transitions and participate in interdisciplinary ethical deliberations. Dignity-conserving care was a further subcategory: minimizing unnecessary invasive monitoring, providing gentle hygiene, managing terminal secretions quietly and ensuring the child is surrounded by family rather than cold technical machinery. A bereaved mother corroborated this, recalling that even when her daughter was unresponsive, the nurse spoke softly before touching her, repositioned her gently and kept her covered and peaceful. The sixth category addressed interdisciplinary collaboration, with nurses synchronizing pain consults, psychological support and dietary modifications into one cohesive daily care plan, and conveying families’ emotional trajectories and spiritual preferences during shift handovers so that continuity of care is unbroken.

The authors are careful about what these findings do and do not establish. Because the design is qualitative and explores subjective perceptions, the study cannot assess actual nursing competence or care outcomes; the resulting framework represents stakeholder expectations rather than objectively measured clinical proficiency. The concept of a good death remains an interpretive, highly subjective construct, and the researchers state that the competencies should be understood as foundational capacities supporting a dignified passing rather than guaranteed predictors of one. Limitations include the single-hospital setting, which limits transferability; small and uneven stakeholder groups, with only two parents and no independent saturation for the parent and supervisor subgroups; the absence of children’s own perspectives, judged ethically unfeasible given patients’ critical condition; possible selection bias from the mental-health exclusion criterion; social-desirability bias in self-reports; and potential translation-related loss of meaning. The authors also distinguish between practices currently enacted, described by bedside nurses and parents, and aspirational competencies articulated mainly by faculty and supervisors.

The practical value lies in what the framework could inform. The authors position the six categories as a preliminary, context-sensitive conceptualization rather than a validated competency framework, suitable as an initial reference for future co-design of localized clinical protocols, for paediatric palliative care training modules, and for exploring formal workplace support mechanisms such as structured reflective debriefing for nurses in paediatric and intensive care units. They note that Iran’s paediatric palliative care capacity is currently categorized at the capacity-building stage in the EMRO Atlas, that paediatric end-of-life care is not yet formally institutionalized as a distinct specialty there, and that most existing competency frameworks assume dedicated palliative teams and infrastructure that resource-constrained settings lack. Before any formal use, the researchers write, the proposed competencies require rigorous stakeholder and expert content validation, assessment across multiple hospitals and regions, behavioural definition of each competency, and robust psychometric or performance-based evaluation, with future studies urged to include broader parent participation and, where ethically possible, the perspectives of older children and adolescents themselves.

Subject of Research: Stakeholder-perceived nursing competencies for paediatric end-of-life care in Iran

Article Title: Exploring Stakeholders' Perspectives on Required Nursing Competencies in Paediatric End‐of‐Life Care: A Qualitative Study

Article References: Panahi, L., Taheri‐Ezbarami, Z., Rassouli, M., & Pouy, S. (2026). Exploring Stakeholders' Perspectives on Required Nursing Competencies in Paediatric End‐of‐Life Care: A Qualitative Study. Nursing Open, 13(11), Article e71011. https://doi.org/10.1002/nop2.71011

Image Credits: AI Generated

DOI: 10.1002/nop2.71011

Keywords: paediatric end-of-life care, nursing competencies, qualitative content analysis, palliative care, bereavement support, spiritual care, ethical decision-making, family-centred care, Iran, PICU nursing, communication skills, stakeholder perspectives