The perspective of the child is important when making decisions about his or her health [1–3]. When children are involved in decision-making, they experience decreased anxiety and an increased sense of value and control [3, 4]. Their involvement is also thought to improve communication between children, parents and clinician(s); which is important for child/parent satisfaction and may also improve adherence with the chosen treatment [5, 6]. The practice of including children in decision-making is also advocated by several prominent organizations. In 1989, the United Nations Convention on the Rights of a Child (UNCRC) provided grounds for a child’s right to be involved in decisions regarding his or her health [7]. The American Academy of Pediatrics Committee on Bioethics recommends that children should be included in decision-making to the greatest extent possible [8]. Children’s ability to make health decisions is influenced by multiple factors such as developmental stage, experience with the disease, and parental and health professional attitudes about the child’s capacity [9, 10]. For example, in a recent study involving children with Type I diabetes making decisions with their parent and healthcare team, children as young as 8 years old were successfully recruited [11]. Therefore, the extent that children can participate in health decisions should depend on their ability and not their chronological age. As such, children’s competence should be assessed on an individual basis and in relation to the decision being made. Nonetheless, lack of competence should not be a reason to restrict children’s right to participate in decisions about their health [9].

Despite benefits and clear mandates for including children, studies show that children are not sufficiently involved and their preferences are not being elicited as often or consistently as they could be [9, 10, 12, 13]. Furthermore, although most clinicians recognize the need to include children in decision-making, they have varying opinions about when and how to do so [14]. Factors such as the child’s age, length of illness, previous experiences, clinical condition, behavior, and ability to express oneself are often considered when deciding whether or not to include him or her [1, 14, 15]. As a result, children are often excluded, which may lead to fear, confusion, and anger on the part of the child [3, 16].

A Cochrane review examined the effects of interventions that enhance general communication between health professionals and children with cancer [17]. Although some interventions demonstrated some benefit to children by improving knowledge, psychological support, and reintegration into school and social activities, the communication interventions in this review were not designed to address children’s decision-making needs. Another Cochrane review of interventions to support shared decision making in children with cancer had no studies that meet the inclusion criteria [18]. No other systematic review has specifically explored interventions tailored to support children in their health-related decision-making. The purpose of this systematic review was to explore the characteristics and effectiveness of interventions that support the decision-making needs of children who are actively considering a health-related decision.

This systematic review was designed to evaluate the characteristics and effectiveness of interventions that support children in health decision-making. Although interventions to support decision-making in the adult setting have been well tested, [22] the evaluation of formal interventions supporting pediatric health related decision-making is lacking. Our systematic review identified only 5 studies of which 4 evaluated decision coaching with or without a co-intervention aid (e.g., computer programs, workbook exercises, information packages), 1 evaluated an educational workshop, and none evaluated patient decision aids with decision coaching. Interestingly however, 3 of the 5 studies included in this review were published within the last 5 years, which may indicate a growing interest in evaluating interventions to support children’s decision-making.

Two studies had statistically significant findings: coaching alone increased agreement between parent and child values (i.e., values congruence) between child and parent as well as child satisfaction with the decision-making process (1 RCT), and education alone increased overall decision-making quality (1 CBA study). Three studies found no difference in decision-making quality, satisfaction with the decision-making process, and child participation in decision-making (2 RCTs, 1 non-randomized CT). We could not comment on the clinical significance of the findings because either the scales used to measure the outcome lacked psychometric properties or the effect size of significant results were not provided in the original article.

Coaching was part of the decision support interventions in 4 of 5 studies. The study by Lyon and colleagues, [28, 32] which was one of the higher quality studies that met most elements of decision support, used a coaching alone intervention for end-of-life decision-making. It found increased values congruence between child and parent, and increased child satisfaction with the decision-making process compared to controls. These findings are consistent with a systematic review of decision coaching interventions that found adults were more satisfied when decision coaching was used alone or in conjunction with patient decision aids compared to usual care or a patient decision aid alone [35]. Interestingly, the positive study included in our review coached both parents and children together, [28, 32] whereas other studies coached children only [27, 29, 30]. Decision coaching with both children and parents may be important for shared decision making within pediatrics as it can prepare all stakeholders who have an impact on the outcome and implementation of the decision [36, 37].

Coaching was also provided together with educational resources such as computer programs, workbook exercises, and information packages [27, 29]. Adams and colleagues [26] demonstrated that participants could establish clear values, and found correspondence between those values and chosen behavior; however they did not find a difference based on intervention. Rhee and colleagues [29] also found no difference based on intervention. These educational interventions appear to be similar to patient decision aids, which help prepare individuals to make a decision with their health professional [22]. However, education alone may not fully support decision-making as it does not address the patient’s contextual and social influences [21, 22]. A systematic review of the decision-making needs of parents concluded that parents require not only timely, reliable, and current information but also support for the preference-sensitive nature of many decisions [21]. In contrast to the simple patient education resources evaluated in the studies included in this systematic review, patient decision aids better support SDM by also making explicit that a decision needs to be made, providing values clarification, and guiding patients through a stepped approach to thinking about the decision [22].

A review evaluating patient decision aids with adults found they increase knowledge, accuracy of risk perceptions, and the consistency of decisions with patient values [22]. Patient decision aids also lower decisional conflict (related to feeling uniformed and having unclear values), decrease indecision, and increase participation in decision-making. Since these interventions are successful with adult populations, it is possible that educational aids that account for the social and values-dependent nature of decision-making may be an effective intervention with children. However, similar to decision coaching, little research has been conducted regarding their use with either children and/or their parents.

There are several limitations that should be considered when interpreting the results of this systematic review. First, on an individual study level, there were few studies from which to draw firm conclusions. Furthermore, included studies lacked homogeneity with regards to patient context, interventions used, outcomes, and outcome measures; thereby precluding the pooling of results for meta-analysis. The overall quality of included studies ranged from low to high, with only 2 studies adequately meeting the risk of bias criteria. Another limitation was the lack of detail provided about interventions, potentially preventing an accurate assessment of the elements of decision support.

On a review level, although a thorough and systematic approach was used to search the literature with two independent reviewers screening citations, it is possible that relevant studies were missed. This review did not search trial registries and grey literature that may have contained studies that could contribute understanding to this topic. This review may also have been limited by restricting the search to English and French articles [38].

Five studies, of variable quality, evaluated interventions to support children in making health decisions, with most of these studies published within the last five years. Despite increasing interest in supporting children’s participation in health decision making, this systematic review affirms the need for further research examining targeted interventions to support the involvement of children in SDM. Future studies evaluating interventions to support children’s decision-making should use rigorous designs such as randomized control trials or cluster randomized control trials, using outcome measures with evaluated psychometric properties, and clear and detailed reporting of decision support interventions and results.