Interventions for promoting participation in shared decision-making for children with cancer (Protocol)

Abstract

[Extract] Children's rights to have their views heard in matters that affect their lives are now well established since the publication of the UN Convention treaty (United Nations 1989). There is considerable support for involving children in the healthcare decision-making process, and a dearth of well-articulated reasons to exclude them. Children's participation in health matters has been demonstrated to reduce healthcare use (McPherson 2006), increase adherence (De Winter 2002), increase internal locus of control and decision-making ability (Tiffenberg 2000), enhance competence, decrease fears and concerns (Runeson 2002), and promote satisfaction with health care (Freed 1998). Lack of involvement can have adverse consequences such as increased fears and anxieties, reduced self-esteem, depersonalization, and feeling unprepared for procedures (Coyne 2006). Therefore key documents emphasize the importance of children's participation in decision-making at a level commensurate with their experience, age, and abilities (Boylan 2004; Cavet 2005; Spinetta 2003).