Children's participation in decision-making in health care

Abstract
The main purpose was to investigate children's participation in the decision-making processes in health care. Twenty-four children (0-18 år)admitted to hospital, their parents, and the staff present were observed during totally 135 hours in order to (i) identify the children's needs, (ii) their participation in the decision-making processes, and (iii) their parents' participation. Twenty-six children (6-17 years) and 21 parents were interviewed about their experiences of hospital stay, and finally 92 health care professionals described situations containing different degrees of children's participation. The result showed that children had different needs in non threatening and threatening situations. The need for information and participation was most obvious in non threatening situations. By using an instrument, "The scale if participation in decision-making" it was possible to assess the degree of participation in decision-making. It was considered that children were not allways allowed to participate to the extent that was judged optimal. Factors influencing the degree of participation were the age of the child, the child's protest, parents' role, staff's attitude, the time factor, and alternative solutions to the problems. Parents participated to different degrees, depending on how explicit they explained their needs and how sensitive staff were to the parents' sometime vagely expressed needs. Staff have to be aware of the individual child's needs in different situations and facilitate for optimal participation. The instrument used could be helpful in claryfying the discussion concerning participation. Every person is called upon to assess the child's competence, investigate the opinions, wishes, and valuations of the child, and decide how to respect them
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A. S. Iltis (2010). Toward a Coherent Account of Pediatric Decision Making. Journal of Medicine and Philosophy 35 (5):526-552.
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