Mothers of Children in Palliative Care Share Lived Experiences and Stressors

Mothers caring for children who need palliative care live with a form of stress that is not a series of crises but a permanent backdrop to everyday life, according to a new phenomenological study published in the Journal of Child and Family Studies. The research, led by Sara Rossi, Barbara Rizzi and Angela Recchia of Fondazione VIDAS ETS in Milan together with colleagues at VIDAS ODV, set out to understand how parents of children admitted to a pediatric hospice actually experience their daily lives, what generates their stress, and how they attempt to make sense of a situation in which the future is permanently uncertain. What emerged is a portrait of motherhood reshaped around illness, in which mothers continually renegotiate what “normality” means, oscillating between the roles of parent and caregiver and searching for an identity that can absorb both.

The study adopted a qualitative, phenomenological design, a methodology that aims to describe experiences as they are lived rather than to measure them with standardized instruments. Phenomenology, as applied in health research, asks researchers to set aside preconceptions and to reconstruct the structure of an experience from the inside, through the words of those who live it. The Italian team used purposive sampling to recruit parents of children receiving care at a pediatric hospice, and conducted in-depth interviews that were then analyzed through an interpretive framework inspired by the hermeneutic philosophy of Paul Ricoeur. This approach moves through successive levels of reading, first understanding the text of each interview on its own terms and then interpreting it in relation to the whole, allowing themes to emerge from the material rather than being imposed on it. Stress, importantly, was not treated as a clinical variable to be scored, but as a “sensitising lens,” a conceptual orientation that guided the researchers’ attention without dictating what they would find.

Three main themes organized the experiences and stressors reported by the mothers. The first concerned narrating motherhood within pediatric palliative care: meaning-making and the search for identity. For these women, becoming the mother of a child with a life-limiting condition profoundly transformed their sense of who they are. The maternal identity they had imagined was replaced by one that had to incorporate medical terminology, technical procedures and constant vigilance. The second theme described discovering the child’s condition: becoming experts and navigating care. Following diagnosis, mothers described an intensive process of learning, in which they acquired specialized knowledge about their child’s disease, treatments and equipment, often becoming the most expert people in the room when it came to their own child. The third theme captured living with uncertainty: the maternal stressors embedded in palliative care settings, the perpetual instability of a life in which clinical conditions can change at any moment and no long-term plan can be relied upon.

One of the study’s most striking findings concerns the overlap between the role of mother and the role of nurse. The mothers described performing intimate care tasks, administering medications, managing devices and monitoring symptoms, tasks that belong to the professional nursing domain, while simultaneously trying to remain “just” a mother. The researchers found that this superimposition of roles generated instability and confusion: mothers struggled to know when they were parenting and when they were providing care, and the boundary between affection and technique repeatedly dissolved. This confusion was not merely a practical inconvenience. It struck at identity, forcing mothers to ask what kind of mother they could be to a child whose needs were so medicalized. The authors suggest that this identity negotiation is one of the central psychological tasks of parenting within pediatric palliative care, and one that services rarely acknowledge explicitly.

The study also documents how mothers actively searched for meaning and for a “new normality” after learning of their child’s condition. Crucially, this normality was not a stable achievement but an unstable, continuously adjusted equilibrium. What counted as normal shifted with the child’s clinical status, with the demands of treatment, with parental employment and with the needs of the wider family. A period of stability at home could be overturned by an infection or a hospital admission; a return to routine could be interrupted by a new symptom. Mothers therefore described normality as something that had to be rebuilt again and again, a moving target rather than a destination. This finding complicates the intuitive idea that families in palliative care simply “accept” their situation; instead, the mothers in this study were engaged in perpetual, active recalibration.

The phenomenological analysis revealed that stress did not arrive as a series of discrete, identifiable events. Rather, it formed a constant background hum against which all of daily life unfolded. Individual incidents, a difficult conversation with a clinician, a sleepless night, a setback in the child’s condition, did not create stress from nothing; they resonated with and amplified an already-existing state of sustained strain. This has methodological and clinical implications. Instruments that measure stress as episodic or event-driven may systematically underestimate the burden carried by these parents, because the burden is chronic and ambient rather than acute and punctuated. The mothers’ own accounts suggest that what they most needed was not crisis intervention but recognition that their whole life structure, work, relationships, identity and rest, was being continuously reshaped by their child’s condition.

Negative relational experiences with healthcare professionals emerged as particularly corrosive. The study found that when mothers encountered insensitivity, dismissal or inflexibility from staff, these interactions left a persistent trace, a lasting emotional scar that outlived the encounter itself. Conversely, the findings strongly support the claim that healthcare organizations and professionals can meaningfully support parents by being flexible and by tailoring services to their needs. The authors argue that flexibility is not a luxury but a clinical necessity: because each family’s “new normality” is configured differently, depending on employment, family composition and the child’s fluctuating condition, rigid service structures tend to collide with the realities of these households. Support that adapts, listens and validates mothers’ dual role as parent and expert caregiver aligns with what the data show families actually need.

The context of the research gives its findings additional weight. Pediatric palliative care is a rapidly developing field internationally, with recent work establishing global standards and estimating substantial numbers of children worldwide who require such services. Parents of children with life-threatening or life-limiting conditions are consistently shown in the literature to experience elevated stress compared with other parents, with documented effects on mental health, physical health and family functioning. Prior qualitative studies have described the heavy caregiving tasks parents undertake at home and their coping strategies, but parental stress in this population had remained underexplored as a lived, subjective phenomenon. By conceptualizing stress as a lens for understanding meaning-making rather than as an outcome variable, the Milan team contributes a perspective that complements the quantitative literature and gives clinical teams a richer vocabulary for listening to families.

The research was conducted in accordance with the Declaration of Helsinki, with ethical approval from the Ethical Committee of Milano Area 2, and written informed consent was obtained from all participants. The study was enabled by the participation of families and by the hospice organization VIDAS, and the authors emphasize that the mothers’ willingness to narrate their experiences, at moments of extreme vulnerability, is itself an act of trust that healthcare systems should honor with responsive care. The corresponding author, Angela Recchia, notes that the findings are intended to inform how palliative services organize themselves around families rather than expecting families to contort themselves around services.

Taken together, the study reframes parental stress in pediatric palliative care not as pathology to be measured but as a signal pointing to structural features of care. If stress is a constant backdrop, then occasional respite or crisis counseling will not suffice; what is required is a system in which flexibility, continuity and recognition of mothers’ expertise are built into the design of care. The question the mothers kept returning to, “What is normality?”, is not rhetorical. It is the practical question their daily lives force them to answer, and the study suggests that health systems, employers and communities share responsibility for helping them answer it, one adjusted, unstable, reconstructed normal day at a time.