Abstract
Children’s participation in decision-making in the health care setting is complex because parents and health professionals tend to take a protective stance towards children to act in their best interest. Children prefer to be protected in some situations and to share decision-making in others. Adults in the health care setting need to consider children as individuals, rather than as a homogenous group, and take into account that a child’s competence and preferences will depend on the circumstances in every situation. This article argues for a situational perspective of children’s participation to act in the child’s best interest and to balance protection with shared decision-making, according to children’s rights and desires.
Introduction
There is a growing global trend towards acknowledging children and young people’s right to participate in matters that affect them (United Nations Convention on the Rights of the Child, 1989). In healthcare, children’s right to participate has become an established principle in Ireland (Department of Health and Children, 2000); in England (Department of Health, 2003), and also at international level (American Academy of Pediatrics Committee on Bioethics, 1995). The Irish National Children’s Strategy (2000) recommends that all organisations develop consultation mechanisms to involve children in decisions. Likewise in England, the Children’s National Service Framework states that “children should be encouraged to be active partners in decisions about their health and care, and, where possible, be able to exercise choice” (Department of Health, 2003: p9). Although the principle of children’s participation is endorsed by different organisations, research in the healthcare setting indicates that children play a marginal role in the decision-making process (Beresford and Sloper 2003; Curtis et al., 2004; Hallstrom and Elander, 2004).
Involving children in decision-making is complex because of issues such as: adults’ instincts to protect children from distressing information and the burden of decision-making, adults’ concerns about children’s competence to participate, and the child’s position in the three-way relationship (child-parent-health professional). To recognise and implement children’s right to participate, adults’ actions in the health-care setting in the best interest of children have to be considered. Acting in the child’s best interest is founded on the ethical principle of beneficence which is to do good for another. This article provides an argument for a situational perspective of children’s participation to enable protection to be balanced with shared decision-making.
Adults’ protection of children
There are divergent opinions among health professionals and parents in the health- care setting, on whether children should be allowed, and encouraged, to have a say in matters that affect them or not (Ross, 1997; Shemmings, 2000). Parents’ and health professionals’ actions have a significant influence on children’s opportunities to participate in the decision-making process (Coyne, 2008; Gabe et al., 2004; Légaré et al. 2008; Tates and Meeuwesen, 2000; Tates et al., 2002a).
In healthcare, adults exercise control over children by making decisions about their welfare. They act in the child’s ‘best interest’, as the child’s health is the primary consideration (Elliston, 2007; Ross, 1997). Children in a health- care environment are seen as in need of protection as they are unwell, in an unfamiliar environment and have a lack of knowledge of medical matters. Substituting an adult judgement of what is in a child’s best interest is not necessarily equivalent with the child’s best interest. Acting in a child’s best interest should mean enabling his/her views to be heard alongside the views of parents and health professionals.
The best interest principle can result in children’s right to be involved in healthcare decisions being restricted and their wishes and feelings overridden by adults (Elliston 2007, Kilkelly and Donnelly 2006). This misuse of the principle is supported by Boylan’s (2004) summary account, which reported that children were not sufficiently involved in the decision-making process and that they wanted to participate in decisions about their treatment, rather than being passive recipients of care.
In healthcare, parents may believe that they have to protect children from upsetting information and difficult decisions. Research from an oncology unit revealed how parents controlled their children’s informational needs because of concerns in managing their identity as strong, optimistic parents protecting their child’s well-being. The children (aged 8–17 years old) welcomed their parents’ role as information-controller, but some were unhappy with the constraining aspects of their parents’ role (Young et al., 2003). In another study, children aged 7–18 years old, with various medical and surgical conditions, reported how their parent/s inhibited their participation by actions such as: answering questions on their behalf; telling them to stay quiet; reprimanding them for interrupting discussions; and, withholding information. Though the children valued their parents’ role as advocates, they expressed unease with aspects of their parents’ role (Coyne et al., 2006). Controlling information by withholding, or limiting, it restricts children’s opportunities to participate, as information is a prerequisite for decision-making.
Adults’ issues of children’s competence to participate
Weithorn and Campbell’s (1982) seminal study is most often quoted in relation to children’s competence. The study found that children of 14 years old had a similar level of competence to adults, while younger children were less competent. Hence, adults may believe that children younger than 14 do not have the competence required to participate in decision-making. Healthcare professionals often experience difficulty reconciling the opposing objectives of children being seen as immature and in need of protection, but also having a right to participate in all matters that affect their lives (British Medical Association, 2001). Researchers have found that health professionals are more inclined to involve children from the age of 11 years old directly in the consultation process (Tates and Meeuwesen 2000; Tates et al,. 2002b). It has also been suggested that children’s participation in decision-making in healthcare is more dependent on parents’ and health professionals’ attitudes, rather than on their actual competence (Martenson and Fagerskiold, 2007). Aside from the issue of age and attitudes related to children’s competence, some healthcare professionals seem to believe that children’s participation depends on general assumptions about children’s competence and being defined as a rational subject; this can result in underestimation of an individual child’s competence to understand a situation or information given (Coyne, 2006).
The three-way relationship: Child-parent-health professional
Every healthcare situation with a child involves several participants with different perspectives to consider. In those situations, it seems as if adults have the evident right to make decisions and be in charge of information. Research from Sweden has found that during children’s hospitalisation, decisions are frequently made by parents or health professionals and are enforced without consulting the children (Runeson et al., 2000). Furthermore, parents did not always support their children in difficult situations and healthcare professionals could inform children without eliciting their views or presenting alternatives (Runeson et al. 2001; Runeson et al. 2002). Other research has shown that parents tended to take the side of the healthcare professionals in conflicts between the child and professionals (Angst and Deatrick 1996; Runeson et al., 2002). Although children were involved, they made few decisions themselves and, even if they disagreed with the decision of the health professionals, few decisions were reconsidered (Hallstrom and Elander, 2004). There is also other research which suggests that health professionals want to facilitate children’s participation but are constrained by parents who advocate a passive child role because of their protective beliefs (Tates et al., 2002a). The research presented here exhibits how the three-way relationship in a healthcare situation put children in an excluding position which will not promote their development of self-determination.
A situational perspective on a child’s participation in decision-making
Recognising children’s rights to be heard could be interpreted as acting in the child’s best interest by giving him/her sole responsibility for making decisions or overestimating desired level of autonomy (Britto et al., 2007). Generalisations about children are rather problematic as they are not a homogenous group (Pufall and Unsworth, 2004). It cannot be assumed that all children desire responsibility for decision-making or that participation confers benefits on all children, irrespective of situation (Coyne et al. 2006; Stegenga and Ward-Smith, 2008; Zwaanswijk et al., 2007).
Children prefer shared decision-making
Children’s lives are closely intertwined with their families and they receive advice and guidance regarding various matters throughout their childhood. This position does not change in the case of illness. Therefore parents/families roles in supporting children in decision-making should be welcomed (Dixon-Woods et al., 1999; Meng and McConnell, 2002). Although children’s competence has been underestimated in the past, children still require, and desire, assistance with healthcare decisions (Coyne et al., 2006). Faced with information and options, children may not have developed the competence required to make discriminations and choices. Research has found that, even when children are deemed competent of making healthcare choices, they still desire support and favour shared decision-making in conjunction with family members and health professionals (Alderson, 1993; Coyne et al., 2006; Zwaanswijk et al., 2007). In a study of children’s consent to surgery, Alderson (1993) found that children preferred their parent to be involved as supporters, interpreters and decision-sharers. Deatrick (1984) found that chronically disabled children (average age: 14 years) reported fear and concerns about having responsibility for decision about surgery because of difficulty in interpreting the varying opinions of health professionals and the spoken or unspoken desires of parents’.
Decisions regarding treatment for children are seldom made in isolation; decisions are made with the support of others, such as parents, extended family, friends and health professionals. Children may want to participate in discussions about their care to have their voices heard in relation to their needs, rather than have full responsibility for decision-making (Boylan, 2004). Placing pressure on children to participate could be harmful in that children could be placed in situations without safeguards or support. Children may be forced to exert self-determination before they have developed the competence to recognise the implications of their actions. This may lead them to make decisions that they could later regret. To share decision-making promotes respect for children’s competencies and provide opportunities for their further development (McCabe, 1996).
Considering children’s competence in every situation
Deatrick et al. (2003) revealed shortcomings in the competency scale presented earlier (Weithorn and Campbell, 1984) and they advised against reliance upon these findings. This is because other conditions, such as judgement, experiences, nature of illness, family background, education and the specific situation other than age, will influence children’s competence. This is also supported by others who state that age may not equate with a child’s development (Alderson, 1993; Alderson et al., 2006; Christensen, 1998; Halpern-Felsher and Cauffman, 2001). Hence, some argue that children, including infants, are generally competent to voice preferences on a wide range of matters (Alderson et al,. 2006; Alderson, 2007; Nova et al., 2005;). Therefore adults’ preoccupation with competency issues may reflect an inability to recognise, and take account of, children’s competencies and understandings (Alderson, 2007). Competence in healthcare should be seen as a decision-specific and situation-relative issue, rather than just age-related (Koocher and De Maso, 1990).
Further, children’s self-determination should be promoted and they cannot be expected to develop decision-making competence when they reach the age of 18 years old without adult-guided practice. Children need opportunities to learn how to participate in decision-making over a period of time and in various situations. The ever changing context of children’s lives in today’s society suggests that children’s competence to participate in decision-making must be continuously re-evaluated. Alderson (1993: p. 158) recommends that we must not “think in sharp dichotomies of wise adult/immature child, infallible doctor/ignorant patient, but to see wisdom and uncertainty shared among people of varying ages and experience”.
Towards a situational perspective
To act in the child’s best interest, adults in a healthcare setting need to think of children’s participation in decision-making in a situational way, i.e. to consider the children’s own contribution in a situation. Researchers suggest that children will influence their own involvement by being engaged or disengaged in the decision-making process (Gabe et al., 2004; Garth et al., 2009; Tates et al., 2002b). Children’s own contribution and engagement reflects their wish to be involved, or not, in decision-making. Children’s preferences may vary according to their illness, their competence, their age and type of decision to be made. Further, participation in decision-making is a graduated process and children can vacillate between dependence to independence and back again depending on their healthcare requirements (Coad and Houston, 2007).
Therefore, parents and professionals should view children as individuals with needs that vary according to each situation. The need for protection and/or participation is situational, rather than temporally bounded. The situational position recognises children’s right to have a say, without necessarily having full control over decision-making. Harrison et al. (1997: p. 826) suggest that it is more “helpful and respectful to affirm the parents’ responsibility for the care of their child while allowing the child to exercise choice in a measure appropriate to his or her level of development and experience of illness and treatment”. Ensuring participation from a situational standpoint will allow a balance between protection and shared decision-making, as it enables children’s voices and preferences to be heard.
Conclusion
Adults may protect children from information and participation in decision-making from a general perspective of children as not being fully competent. Adults may also protect and share the decision-making with a child from a situational perspective departing from his/her actual competence and voiced, or demonstrated, desire and rights. However, both approaches result from a desire to act in the best interest of a child. Even if a situational approach is preferred, it is a balancing act. A child’s need of protection in one situation may lead to exclusion in the next, in which the child desires shared decision-making. A child’s needs have to be considered in each situation, meaning that adults have to use their power and agency wisely and have to be sensitive towards a child’s ways of expressing his or her needs.
Balancing children’s right to participate in decision-making and their need and right for protection can be at its most extreme in a healthcare situation, as adult’s actions in the best interest of a child may fit the agenda of healthcare professionals and the healthcare circumstances more than the child’s actual best interest. There is still uncertainty, discrepant opinions and fears among adults regarding children’s participation in decision-making (Coyne, 2008). Légaré et al. (2008) suggest that several factors, such as time, patient characteristics and clinical situation are barriers to shared decision-making between child, parent and health professional. Healthcare professionals can, from their position of competence, overview those factors and play a key role in acting in the best interest of each child by supporting his or her needs of protection versus shared decision-making.
Footnotes
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.