Being a child while seriously ill: parental and physician perspectives on suffering and adaptation

Suffering is central to the care of children with life-threatening conditions, yet it can be difficult to recognize and assess, and its role in treatment decisions remains contested.

To explore how parents and physicians interpret suffering in children aged 1-12 years with life-threatening conditions, and how adaptation and opportunities for ordinary childhood shape these judgments.

Qualitative interview study based on grounded theory principles. We interviewed 64 parents of 44 children with life-threatening conditions and 34 physicians in the Netherlands, recruited using maximum-variation sampling. Interviews were conducted from November 2016 to October 2018; coding and analysis were completed in 2020. Perceived sources, domains, and modifiers of suffering were identified through iterative coding and constant comparison.

Participants described 3 overlapping domains of suffering: physical, psychological, and existential. Assessments reflected not only symptoms and functional limitations but also their effects on the child's enjoyment, relationships, participation, agency, and continuity of ordinary childhood. Apparent adaptation could mitigate perceived suffering, whereas limited communication or consciousness made it harder to judge whether and how much the child was suffering.

Parents and physicians understood suffering in seriously ill children as multidimensional, context-dependent, and not directly inferable from symptoms or functional limitations alone. Assessment should distinguish observations from interpretations, incorporate the child's perspective whenever possible, draw on multiple perspectives, and remain open to revision. A proposed reflective framework may support such assessment without quantifying suffering or determining decisions on its own.