Smart, vulnerable, playful or just disturbing? A discourse analysis of child involvement in palliative care

Abstract

In Scandinavian countries, health professionals are legally obliged to involve patients’ minor children. A growing field of research focuses on the support to, and needs and experiences of, these children. We add to previous research by analysing discourse in qualitative interviews with nurses and doctors in Norwegian public palliative health care. The analysis identifies four interpretative repertoires picturing the child in different ways and defining possibilities for what health professionals can say and do regarding child involvement.

Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals

“…Being the gatekeeper to the child, professionals were obligated to respect their adult patients' wishes over how much their child was told about their conditions [24]. However, the professional's own experience informed them that children cope better when aware of what is going on [21,25,26]:…”

“…The situation became more disorderly and chaotic, and the nurses found it more difficult not being able to control and/ or restore the order in the family. " [26] Thus, while professionals empathised with the parents, recognising that they might be having difficulties accepting their prognosis and have the desire to protect their own children from distress, their own perceived duty to the child led to a dilemma that left them feeling powerless [18,19,21,22,[25][26][27]:…”

Going against patients’ will? A qualitative study of how palliative health-care professionals handle competing considerations when children are excluded from parental illness and death

“…Although the "Presenting a realistic picture" position initially seems to help secure children's rights, it also risks implicitly conveying to parents that they are wrong about their children's needs. This may create misunderstandings and conflicts in the dialogue with parents (Hogstad and Jansen, 2020). Believing at the outset to know what is best according to general advice may also impede health professionals' discretionary interpretation of children's specific needs in concrete circumstances (Loyens and Maesschalck, 2010).…”

“…Professionals must report to CPS any suspicions that children are suffering serious harm or neglect. Knowing what constitutes possible harm is a difficult task, and professionals may overestimate or underestimate the probable risk of children's sufferingfor instance, due to preconceptions such as sociocultural conceptions about children's needs (Hogstad and Jansen, 2020). In addition, when patients keep children away from the health care system, health professionals do not even have the opportunity to consider possible harm to the children.…”

Parental death in young children’s lives: health professionals’ and kindergarten teachers’ contributions in meaning-making

“…Recent changes in laws and recommendations for health professionals in Scandinavian countries oblige palliative health-care professionals to focus on patients' minor children by addressing their needs for appropriate follow-up and individually adapted information about prognosis and diagnosis (Danish Health Authority [Sundhedsstyrelsen] 2012;Norwegian Health Personnel Act 1999;Swedish Law of Health and Medicine 2017). However, the patient-centeredness and the medical code ruling within the health care system can seem to make health professionals prioritize medical tasks above psychosocial issues (Karidar, Åkesson, and Glasdam 2016) and limit health professionals' possibilities for involving children (Dencker et al 2017;Hogstad and Jansen 2020). Several studies point to insufficient support from health professionals to minor children of severely ill patients and their families (Golsäter et al 2016;Ruud et al 2015).…”