Papel de la obestatina en la capacidad funcional

A range of factors that facilitate child-parent shared decision-making were identified and these were grouped into five interlinked categories:

 Locus of control for both child and parent

 Child’s developing cognition

 Child-parent’s value of transferring care responsibility

 Incorporating the management of the child’s long-term condition within family life

 Effective health care professionals support Locus of control both child and parent

Two studies included in the review, identified that children with a strong internal locus of control contribute to decision-making and perceive they are able to influence decisions

about the management of their long-term condition (Miller and Harris, 2012; Williams et al., 2007). Children were found to be positive about being included in the decision-making process which increased their perceived control of their condition and improved adherence to medication (Miller, 2009). In addition, children with a strong internal locus of control were more likely to be autonomous decision-makers due to an increased knowledge about their asthma condition and recognising their treatment decisions would positively affect their asthma management (Meng and McConnell, 2002). Across a range of long-term conditions, children aged between four and sixteen years of age were found to be capable, depending on their motivation and commensurate with their cognitive development, of taking on some of the responsibility for the management of their condition (Fereday et al., 2009). Parents that participated in the same study reported being proactive in supporting their child to become independent (Fereday et al., 2009). Decision-making was highlighted as a factor that contributed to the child having confidence to participate in school and family activities rather than the long-term condition and chronic illness being seen as a barrier (Fereday et al., 2009). Shared decision-making enabled the child to participate in decisions about their care and treatments without having the responsibility of total control (Miller and Harris, 2012; Miller et al., 2008).

Child’s developing cognition

As a child’s cognitive development increased, greater knowledge of their condition helped facilitate children to appreciate the risks and benefits of their treatment (Miller and Harris, 2012; Miller et al., 2008). The child’s developing cognition was linked to parents’ attitudes towards transferring care responsibility. Findings suggested that parents relinquishing control over the management decisions to their child were influenced by parental confidence in their child’s cognitive ability and reasoning skills (Meah et al., 2009; Miller, 2009; Pradel et al., 2001, Buford, 2004). Parents acknowledge that as the child’s level of knowledge and skills at managing their condition increase this corresponds with an increased responsibility within the decision-making process and within family life (Miller, 2009). Parents were less likely to take control of the decision with increasing child cognitive development (Miller et al., 2008).

Parents needed reassurance that the child was aware of illness symptoms and sought or initiated appropriate interventions (Williams et al., 2007). According to Buford’s (2004) theoretical model for child-parent transfer of asthma responsibility, ‘gaining control’ was identified as a transition stage where the parent retains overall management of their child’s condition, but begins to involve the child in care decisions. In this transition stage the child is around five to eight years of age. Children are able to identify changes in their body and initiate appropriate management strategies in response to acute illness symptoms (Meah et al., 2009; Miller, 2009; Alderson et al., 2006a; Pradel et al., 2001). In relation to asthma, it has been suggested that children younger than eight years of age can recognise illness symptoms and need for medication, but may not make other decisions, such as trigger avoidance (Buford 2004).

Child-parent’s value of transferring care responsibility

During the ‘empowerment stage’ of Buford’s (2004) theoretical model for child-parent transfer of asthma responsibility, when the child is approximately eleven years of age, the child assumes greater responsibility for the management of their condition and can initiate broader management decisions such as trigger avoidance. Although there is a relationship between chronological age and increased child responsibility for asthma management (Meah et al. 2003), children were more likely to be involved within the decision-making process when they were in a supportive environment (Chisholm et al., 2012; Taylor et al., 2009). The child is able to apply a logical thought process to existing problems, for example, respond to illness symptoms.Increased child autonomy and fostering independence by involving the child in healthcare decisions can improve adherence to medication (Williams et al., 2007). Although older children demonstrate increased independent decision-making and reasoning skills, younger children are more likely to rely on parents to make decisions about their care (Williams et al., 2007). The level of child participation within the decision-making process appears dependent on parental support (Williams et al., 2007). Transferring care decisions provided the child with the confidence to make treatment decisions (Miller and Harris, 2012; Miller, 2009; Miller et al., 2008; Pradel et al., 2001) or participate within day-to- day leisure and physical activities (Fereday et al., 2009). Children report they share the

decision with their parent even when they believed it should be their own autonomous decision (Miller et al., 2008).

Incorporating the management of the child’s long-term condition within family life Collaboration between the child and parent appears to facilitate incorporating the management of the child’s long-term condition within family life (Fereday et al., 2009). Children initially make autonomous decisions about illness symptoms at school or a sleep- over without parents, with the gradual transferring of acquired management skills to the home environment (Newbould et al., 2008; Buford, 2004). Many parents reported the transition as a normal part of growing up or when the parent realised the child’s need for control (Newbould et al., 2008; Buford, 2004). Through experience of managing the condition the family are more intuitive to meeting their child’s needs, often operating on ‘autopilot’, which can assist in transferring decisions from parent to child (Miller, 2009; Meah et al., 2009; Williams et al., 2007; Buford 2004). Fathers in particular described the management of their child’s long-term condition as a joint child-parent endeavour (Cashin et al., 2008). However, children may neglect to inform their parents of illness episodes when outside the home environment (Hafetz and Miller, 2010; Miller, 2009), this finding

represents the child’s control to: avoid treatment; to continue leisure activity without restrictions imposed by the parent; to ‘be strong’; and to ‘prevent the parent from worrying’ (Miller, 2009; p253). Explanations for this behaviour also include forgetfulness or intentional behaviour to manage their condition in such a way that will not impact on their daily life (Miller, 2009; Meah et al., 2009). Children perceived that shared decision-making is enacted through discussing aspects of the disease management with their parents and negotiating or compromising to solve condition related issues (Miller, 2009). Children and parents

acknowledge an increased level of knowledge and skill demonstrated by the child, awareness of the symptoms and realising when support is required fosters the ability to share the management of the child’s condition (Miller, 2009). Child-parent collaboration of decisions results positively in incorporating the management of the long-term condition within family life (Fereday etal., 2009; Miller, 2009; Cashin et al., 2008; Buford, 2004).

Effective health care professionals support

Effective external support from health care professionals and children was reported across studies as an important aspect of facilitating the child to become involved in care decisions. Providing the child and parent with relevant information and support to assist with the decision-making and moving from a position of parent to child control for the management of their long-term condition (Meah et al., 2009; Williams et al., 2007; Buford, 2004; Pradel et al., 2001), requires equipping the parent with necessary assertive communication skills to avoid friction with the child during the decision-making process (Meng and McConnell, 2002). Parents express concern regarding their child’s asthma management in school (Cashin et al., 2008; Meng and McConnell, 2002). For asthma education to be effective it needs to extend out of the review consultation and into the school setting (Meng and McConnell, 2002). The school nurse plays a pivotal role in educating the child and school staff on

providing a safe school environment for the child with a long-term condition, such as asthma (Cashin et al, 2008). Education provides a safe collaborative working environment and consequently effective overt asthma management between the child, parent, school staff and health care professionals, instead of the child covertly carrying their own asthma

medication, against school policy (Cashin et al., 2008). Effective advice and support from the health care professionals empower the child and parent to share decisions leading to a gradual progression of the parent-child transfer of management decisions for the long-term condition (Meah et al., 2009; Newbould et al., 2008; Williams et al., 2007; Buford, 2004; Meng and McConnell, 2002; Pradel et al., 2001).