Nurses Reveal Hidden Palliative Care Work in Paediatric Oncology

Children with cancer often endure prolonged hospitalisations, painful procedures, and disrupted childhoods, while their parents face complex decisions amid fear and exhaustion. In India, families frequently confront additional pressures related to travel, financial constraints, limited social support, and strong cultural expectations to pursue a cure at all costs, even when a child’s suffering is considerable. A new multicentre qualitative study published in Nursing Open offers a rare, detailed look at how paediatric oncology nurses in three Indian tertiary cancer centres understand, deliver, and integrate palliative and supportive care within routine clinical practice.

The research team interviewed 24 full-time paediatric oncology nurses across tertiary cancer centres in Manipal, Mumbai, and Hyderabad, representing both private and public institutions. All participants were female, aged between 27 and 53 years, with total clinical experience ranging from 2 to 32 years and paediatric oncology experience from 2 to 15 years. Eligible nurses had at least 2 years of clinical experience and were actively providing paediatric oncology care at the time of data collection. Semi-structured, one-to-one interviews lasted 30 to 60 minutes, were conducted in English or the participant’s preferred local language, and were audio-recorded with permission. Transcripts were translated into English with independent back-translation to examine conceptual equivalence, and analysis followed Braun and Clarke’s six phases of reflexive thematic analysis.

Four interrelated themes were constructed from the interviews: Clinical Stabilisation and Treatment Continuity, Relational and Communication Work, Embedded Palliative Care, and Emotional Labour. The first two themes remained close to nurses’ descriptions of clinical and relational practice, while the third was a researcher-generated interpretation. Participants explicitly used palliative-care language for some practices, particularly specialist involvement, refractory symptoms, deterioration, and end-of-life care, but did not consistently label routine comfort, psychosocial, or family-support activities as palliative care. The research team classified selected accounts as palliative in orientation only when they emphasised relief of suffering, dignity, or quality of life.

Nurses described clinical stabilisation as grounded in continuous bedside surveillance throughout each shift. Close monitoring was particularly important for younger children unable to communicate pain or discomfort clearly, requiring nurses to interpret behavioural and physical cues such as altered crying, irritability, reduced intake, and changes in alertness. Observations were carried over shifts through structured handovers that documented overnight symptoms, medication changes, and treatment responses, with prompt reporting to doctors when concerns were identified. Treatment continuity required nurses to anticipate risk and connect otherwise fragmented episodes of care across inpatient, outpatient, and daycare settings. Structural and safety constraints intensified this stabilising role, as chemotherapy precautions, line assessment, test dosing, extravasation surveillance, and infection prevention became forms of compensatory vigilance where sanitation, space, medicines, or staffing were limited.

Relational and communication work functioned as practical infrastructure for care rather than as an optional interpersonal addition. Nurses undertook ongoing explanatory work, translating diagnoses, treatment rationale, side effects, and medication changes into simple terms repeated across admissions and adapted to the child’s age. Children were frequently fearful and resistant during early admissions, but with repeated visits they began to recognise staff and gradually cooperate with procedures. Nurses described building trust through consistent presence, calm communication, and a reassuring manner. Counselling and navigation were described as essential because families were often unfamiliar with the long-term nature of cancer treatment, resulting in missed follow-ups, premature discharge, and poor maintenance adherence. Navigation support included guidance on treatment schedules, financial aid, accommodation, transport, and coordination with social workers and the palliative care team.

A central interpretation of the study is that palliative-oriented support may coexist with disease-directed treatment in everyday oncology nursing. Participants explicitly described palliative care in relation to refractory symptoms, specialist involvement, deterioration, and end-of-life care. They also described end-of-life support as part of routine care, staying present with families, offering psychosocial support during deterioration and imminent death, and continuing support after death through family counselling and body handover. Much of this work occurred without specialist input, particularly in the evenings, at night, and on weekends, making it largely unseen yet central to everyday care. Participants perceived that palliative needs were often recognised only when symptoms worsened or pain became refractory, and described formal referral as late and associated with beliefs that palliative care signalled loss of hope.

Participants perceived that specialist involvement expanded access to advanced symptom management, multidisciplinary coordination, and community support. The palliative team was described as going to patients’ homes, arranging oxygen or an ambulance if needed, and continuing support for as long as the patient was alive. Social workers helped families obtain cheaper medicines through charitable funds, guided them about documents like ration cards and Aadhaar, and arranged free, safe rooms and vehicles for outstation families. A paediatric day-care unit was opened two years ago at one site so children could receive outpatient chemotherapy and reduce admission costs. Free treatment through government schemes and trusts enabled rural and financially constrained families to continue cancer care.

Nurses described emotional labour as sustained, regulated work required to function within emotionally intense paediatric oncology settings, shaped by repeated exposure to suffering, loss, and system pressures. They described consciously suppressing visible distress during demanding clinical interactions to remain present, composed, and functional. Close relationships with children and families, sometimes intensified by nurses’ own parental identifications, made emotional neutrality difficult. Early experiences were marked by shock, sadness, and moral discomfort, particularly when caring for children with whom strong bonds had formed. Sustained exposure accumulated over time, contributing to emotional exhaustion, sleep disturbance, and periods of demotivation. Nurses described adapting not through detachment but by normalising uncertainty and accepting limits to control, drawing meaning from recoveries, survivor follow-ups, and parental gratitude.

System pressures extended emotional labour beyond bedside care into managing families’ basic survival needs, including food, accommodation, transport, and hygiene for outstation caregivers arriving without arrangements. Staffing shortages and high patient loads further constrained the space available for emotional support. One nurse described sharing her own tiffin with a mother who had nothing to eat at night and no money, having recently arrived in Mumbai. Nurses described system failures as not simply limiting emotional care but actively generating additional emotional tasks, embedding emotional labour within the structural work required to keep families able to remain in treatment.

The findings support several considerations for practice and implementation research. Services could consider strengthening generalist palliative-care and trauma-informed competencies, referral pathways, reflective supervision, and navigation support. Paediatric oncology services may consider defining generalist palliative-care competencies for nurses, including developmentally appropriate assessment of symptoms and suffering, communication with children and families, and recognition of indications for specialist referral. Continuity and navigation roles should be clarified within multidisciplinary teams, while structured opportunities for reflective supervision and psychological support may help address the emotional demands described by participants. Each consideration requires local adaptation, formal implementation, and outcome evaluation, as the present qualitative findings do not demonstrate effectiveness. Several limitations should guide interpretation, including recruitment through institutional and professional networks that may have favoured nurses with a positive orientation towards palliative care, the absence of male nurses’ perspectives, and the predominance of private-sector participants. The study was supported by the Indian Council of Medical Research and conducted under ethical approvals from all three participating sites.

Subject of Research: Health

Article Title: Nursing Perspectives on Palliative and Supportive Care in Paediatric Oncology: A Multicentre Qualitative Study

Article References: Harshitha, D., Prasad, A., Rao, K. S., Verma, V., Salian, A., Ghoshal, A., Iyengar, A., Pravalika, A., Mishra, A., Sakpal, A., Vasudeva Bhat, K., Dinand, V., Palat, G., & Salins, N. (2026). Nursing Perspectives on Palliative and Supportive Care in Paediatric Oncology: A Multicentre Qualitative Study. Nursing Open, 13(10), Article e70931. https://doi.org/10.1002/nop2.70931

Image Credits: AI Generated

DOI: 10.1002/nop2.70931

Keywords: palliative care, paediatric oncology, nursing, qualitative research, India, emotional labour, Perspectives, Palliative, Supportive, Care, Paediatric, Oncology