Views of treatment decision making from adolescents with chronic illnesses and their parents: a pilot study

Abstract

Objective Shared decision making may increase satisfaction with health care and improve outcomes, but little is known about adolescentsÕ decision-making preferences. The primary purpose of this study is to describe the decision-making preferences of adolescents with chronic illnesses and their parents, and the extent to which they agree.Design Survey.Setting and participants Participants were 82 adolescents seen at one of four paediatric chronic illness subspecialty clinics and 62 of their parents.Main variables Predictor variables include sociodemographics, health parameters, risk behaviour, and physical and cognitive development. The main outcome variable is preferences for decision-making style.Results and conclusions When collapsed into three response categories, nearly equal percentages of adolescents (37%) and parents (36%) preferred shared decision making. Overall, the largest proportion of adolescents (46%) and parents (53%) preferred passive decision making compared to active or shared decision making. Across five response choices, 33% of pairs agreed. Agreement was slight and not significant. Improved general health perceptions (OR = 0.76, 95% CI = 0.59-0.99) and improved behaviour (OR = 0.75, 95% CI = 0.56-0.99) were significantly associated with parentsÕ preferences for less active decision making. Older age was significantly associated with agreement (OR 1.58, 95% CI = 1.09-2.30) between parents and adolescents. The paucity of significant predictor variables may indicate physicians need to inquire directly about patient and parent preferences.

Children as decision-makers in health care - An integrative review

“…[22,33] Listening to children is important and they should also be trusted. [11,22,23,26,35] Children are able to provide a very different point of view to the planning of treatment. [11] Children and minors should be given a chance to share the decision-making with their parents or healthcare personnel [22,34,40] or they should be provided an opportunity to have someone else make decisions for them.…”

“…[11] Children and minors should be given a chance to share the decision-making with their parents or healthcare personnel [22,34,40] or they should be provided an opportunity to have someone else make decisions for them. [22,26,34,41] The decision-making process depends on how the family in general makes decisions between them. [41,42] Adherence to treatment and trust in the personnel increase when the child is given a chance to participate in the decisionmaking.…”

“…[11,29] Participation in treatment and decision-making cannot be tied to a certain age because cognitive development and willingness vary greatly among children. [11,26,34] Giving information to children and young people is challenging because the amount of information should not be too small or too much. [43] The information related to the illness, risks and the child's real understanding should be realistic.…”

“…[22][23][24][25][26][27][28][29][30] Healthcare professionals make the decisions on behalf of the children and often on behalf of parents as well. [24,25,27,31] The reasons behind this were the attitudes of the personnel and the parents [26,32,33] and the desire to protect the child. [22,33] The inexperience of the personnel in handling pediatric patients also has an effect on how actively the families participated in the decision-making.…”

“I'm the One Taking It”: Adolescent Participation in Chronic Disease Treatment Decisions

“…Yet, the decision-making process in these settings, where adolescents are expected to be relatively independent [6], may not be consistent with how decisions are made in chronic conditions. Studies investigating hypothetical medical decisions show discrepancies between parents' decisions and decision-making style preferences and those of their adolescents [7,8]. Despite these differences, many adolescents report wanting their parent involved in medical decisions [9e13].…”