Discussion

This review aimed to summarise and critically evaluate the literature pertaining to child and/or parent perspective on shared decision-making in the management of a long-term condition. The findings presented have addressed two of the reviews specific objectives; to identify and summarise research that has explored child-parent shared decision-making in the context of children living with a long-term condition; and explore how research has been undertaken in relation to child-parent’s shared decision-making. The remaining objective, exploring the facilitators and barriers that enable or hinder child-parent shared decision- making in the context of children living with a long-term condition will be discussed by making links to the theories or frameworks that may be useful to guide practice in relation to supporting child-parent shared decision-making presented in Chapter 2.

3.8.1 Theoretical perspectives

The progression of the child’s decision-making and reasoning skills appears congruent with Piaget’s concrete operational stage of cognitive development (Piaget, 1969). However, it has been argued for the past 30 years, children can be taught and achieve management task for their long-term condition with adequate support from a more knowledgeable adult

(Vygotsky, 1978; Donaldson, 1978). The reviewed studies identified key facilitators enabling child-parent shared decision-making and include: child’s perceived internal locus of control encouraged greater participation of the child within the decision-making in the management of the long-term condition (Miller and Harris, 2012; Fereday, 2009; Williams et al., 2007; Meng and McConnell, 2002). The child’s cognitive development influenced the degree of management decisions the parent was willing to share (Meah et al., 2009; Miller, 2009; Newbould et al., 2008; Buford, 2004; Pradel et al., 2001). The majority of the reviewed studies employ a model or theoretical underpinning to their research findings which may assist in guiding practice in relation to support child-parent shared decision-making. These include: child’s cognitive development (Alderson et al., 2006a; Alderson et al., 2006b; Miller et al., 2008; Pradel et al., 2001); parent-child transfer of asthma management responsibility (Meah et al., 2009; Buford, 2004); child/parent perceived locus of control (Miller and Harris., 2012; Meng and McConnell., 2002); behavioural theory (Meah et al., 2009; Kieckhefer et al, 2009; Williams et al., 2007; Meng and McConnell., 2002; Pradel et al., 2001).

3.8.2 Approaches to researching the topic of child-parent shared decision-making

Many facets of child-parent shared decision-making in the context of living with a long-term condition were explored which included: the process of transfer of management

responsibility from parent to child as a complex process occurring over years and consists of five stages (Buford, 2004); the child and parent perception of the benefits of management facilitate transfer of responsibilities; the available physical, psychological and sociological resources enable the transfer (Williams et al., 2007); a child with a long-term condition participating within medical research decision, review findings identified that child-parent collaborative decision-making was associated with the child’s increasing cognitive

development (Miller et al., 2008); a child required specific skills to enable participation within medical research (Alderson et al., 2006b); child-parent collaborative decision-making

is vital to a child’s self-management of their long-term condition (Miller, 2009); and children with a long-term condition just want to live a normal life (Alderson et al., 2006a). A specific division of decisions relating to management tasks (Miller and Harris, 2012; Hafetz and Miller, 2010; Fereday et al., 2009; Newbould et al., 2008), context specific for example school issues (Meng and McConnell, 2002); decisions associated with health care advice and support of which children want to be involved (Pritchard, 2012; Taylor et al., 2009) and parents request assistance from health care professionals in managing the transition from parent to child autonomy (Meah et al., 2009; Buford, 2004).

The structured review identified how previous researchers, within this topic area, have designed their studies. A range of methodologies with differing epistemological and ontological assumptions have been employed. The majority of the reviewed studies

employed qualitative methodology; three review studies used a quantitative design (Miller and Harris, 2012; Chisholm et al., 2012; Kieckhefer et al., 2009); two used a mixed methods design combining qualitative and quantitative methods (Newbould et al., 2008; Miller et al., 2008). Each of the study designs were congruent with the study aims, for example; one of the objectives of Newbould etal’s. (2007) study was to document how responsibilities for the management of medication was shared, consequently requiring frequency analyses statistical testing of the data. A second objective was to identify the factors that lead to the transfer of responsibilities (Newbould et al., 2007), conducive with qualitative enquiry. The majority of the studies employed the use of individual in-depth interviews, apart from Taylor et al. (2007) who provided explanations as to why they conducted child-parent joint

interviews; although they do acknowledge the child’s perspective may have been obscured due to their parent’s presence. Overall, the studies within the structured review present quotes from the parent (Cashin et al., 2008); the child’s perspective through the parent’s voice (Taylor et al., 2009; Williams et al., 2007; Buford, 2004;); and quotes from the child (Hafetz and Miller, 2010; Taylor et al., 2010; Meah et al., 2009; Miller, 2009; Miller et al., 2008; Alderson et al., 2006a; Alderson et al., 2006b; Buford, 2004; Pradel et al., 2001). However, an illustration of parent quotes dominating the findings is still evident within Buford’s study (2004). 18 parent quotes are presented; one quote from the child’s

voice is heard the parental quotes dominate the findings (Newbould et al., 2008; Williams et al., 2007; Buford, 2004).Similarly, the quotes presented in the study findings of Taylor et al. (2009) are from children thirteen years and above, despite the age range of the 21 child participants being aged seven to sixteen years. Problem solving designs may be widely used in observational studies of children (Chisholm et al., 2012) but this method is not congruent with the epistemological and ontological perspectives of the researcher for the study; discussed further in Chapter 4, Section4.3.