Children's active participation in decision-making processes during hospitalisation: An observational study

Aims and objectives The aim was to explore and describe the child's active participation in daily healthcare practice at children's hospital units in Sweden. Objectives (a) Identify everyday situations in medical and nursing care that illustrate children's active participation in decision-making, (b) identify various ways of active participation, actual and optimal in situations involving decision-making and (c) explore factors in nursing and medical care that influence children's active participation in decision-making. Background Despite active participation being a fundamental right for children, they are not always involved in decision-making processes during their health care. There still remains uncertainty on how to support children to actively participate in decisions concerning their health care. Design A qualitative study with overt, nonparticipant observations fulfilling the COREQ checklist criteria. Methods Observations of interactions between children aged 2 and 17 years with both acute and chronic conditions, their parents, and healthcare professionals were conducted at three paediatric hospitals in Sweden. The Scale of Degrees of Self Determination was used to grade identified situations. The scale describes five levels of active participation, with level one being the least and level five being the most active level of participation. Normative judgements were also made. Results Children's active participation was assessed as being generally at levels four and five. Children demonstrated both verbal and nonverbal ways of communication during decision-making. Findings indicated that children's, parents' and healthcare professional's actions influenced children's active participation in decision-making processes involving healthcare. Conclusions Healthcare professionals specialised in paediatrics need to embrace both a child perspective and a child's perspective, plan care incorporating key elements of a child-centred care approach, to ensure children's active participation at a level of their choosing. Relevance to clinical practice There is a need for awareness creation to help healthcare professionals facilitate children's active participation in their care and decision-making.