Practitioner Review: Communicating with Hospitalised Children: Review and Application of Research Pertaining to Children's Understanding of Health and Illness

Abstract

There is growing recognition amongst child health care practitioners of children's rights to be informed about their condition and treatment, and to be actively involved in decisions pertaining to their care. In order to facilitate such understanding, there is a need to explore the ways in which such concepts can best be communicated, in particular to younger children whose conceptual ability may be regarded as limited. Consideration of the literature on how children's conceptualisation of health and illness develops reveals diverse perspectives, with seminal work heavily influenced by the work of Piaget (1929), and a belief that the understanding of younger children may be minimal. However, more contemporary theorists refute such beliefs, suggesting that children may have far more potential to understand complex illness concepts than they have previously been given credit for. The work of Carey (1985) and Vygotsky (1962) offers alternative developmental theories congruent with this perspective, which might more appropriately underpin current practice. A variety of clinical situations are then explored in the light of this debate, including preparation of children for hospitalisation, their competence to consent, their views of pain and death, and approaches to child health promotion. Guidelines are offered to practitioners throughout, with the aim of enhancing children's understanding of their conditions, and their active participation in care, which in turn has the potential to optimise care delivery.

Communicating With Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information

“…[165][166][167] The principle of self-determination applies to children and adults. 158,[168][169][170][171][172] Involving children in communication about their health and in decisions regarding their health care shows respect for their capacities, will enhance their skill in the process of making future health decisions, and enables their essential input into decisions where there is no "right answer" other than the 1 that best meets the needs of the individual child and family. 167,169,173,174 Older children and adolescents should have a significant role in such cases.…”

“…168 ) Pediatric health care quality will improve if the child is recognized to have his or her own individual cognitive and emotional needs, is taken seriously, and is considered to be intelligent, capable, and cooperative. 5,137,150,[168][169][170]173,175 Parents and practitioners should decide together whether the child will be present at the informational consultations, whether parents would prefer to tell the child themselves or have another person tell the child, and whether the informing interview will occur with or without the parents present. A recent literature review indicates that children 7 years and older are more accurate than their parents in providing health data that predicts future health outcomes, although they are worse at providing past medical histories.…”

“…Assisting the child to achieve gradually increased capacity to take responsibility for the maintenance of health and the treatment of illness is a crucial task, specific to pediatric physicians and practitioners. 5,168,169 See Table 3 for helpful strategies to accomplish this goal.…”

“…In current Western culture, children are highly valued, yet attention to their autonomous needs, especially when the child is not yet an adolescent, remains challenging. 137,150,168,169,173 There are many reasons to include children as active partners in their own health care; however, this rarely happens. 170 Some attribute this situation to the dearth of tools to clarify children's conceptualization of health and illness, to assess their capacity for decision-making, to effectively share information with children, and to assess the outcome of shared decision making on the child patient.…”

“…184 This position is not supported in the literature that examines the child's preference for information. 5,150,[167][168][169]181,[185][186][187][188] One of the most striking was Bluebond-Langner's 189 landmark study of terminally ill children, indicating that children as young as 3 years of age were aware of their diagnosis and prognosis without ever having been told by an adult. She found that adult avoidance of disclosure and denial of difficult information led the child to feel abandoned and unloved.…”