The role of parents in managing asthma in middle childhood: An important consideration in chronic care
Article Outline
- Summary
- Introduction
- Impact of asthma in children and families
- Parent asthma management during middle childhood
- Implications for practice and research
- Summary
- References
- Copyright
Summary
Asthma is a significant illness for Australian children and their families. In childhood, parents have the primary responsibility for managing asthma on a day-to-day basis, and therefore understanding the management of asthma by parents is important to nursing practice. Middle childhood (5–12 years) is an important time in the lives of children and families with asthma, as children commence school and spend increasing amounts of time away from direct parental care. In order to manage asthma during middle childhood, parents need to understand asthma as an illness, understand the treatment of asthma, be able to monitor and respond to changes in condition, manage other carers, manage asthma in the context of family life and guide the development of self-management responsibility in their child with asthma. While the scope of parent management in terms of asthma knowledge and treatment has been well explored in the literature, less is known about the process by which parents support the development of self-management responsibility in children with asthma.
Keywords: Asthma, Children, Chronic illness, Parents, Self-management
Introduction
Asthma is the most common chronic illness in Australian children (Akinbami and Schoendorf, 2002, ACAM, 2008) and Australia has one of the highest rates of childhood asthma symptoms in the world (Asher et al., 2006, GINA, 2004). Furthermore, the prevalence of asthma in Australian children has increased over the last 30 years, although appears to now be reaching a plateau (ACAM, 2008). Importantly, the impact of asthma on both the community is significant in terms of cost, mortality, quality of life and use of health care services.
Asthma management in childhood must be undertaken and directed by parents and aims to reduce the impact of asthma on the lives of children and their families. In order to optimally manage their child's asthma, parents need to develop confidence and competence in asthma management. Additionally, parents must negotiate the handover of care to children and other carers, particularly during middle childhood (5–12 years of age) when children begin to develop the cognitive and social capacity for self-management and spend increasing time away from parents. This paper discusses the issues parents must consider in asthma management of school aged children including the key features of development during middle childhood.
Impact of asthma in children and families
Asthma in childhood can impact on children and their families in a number of ways including the effects of symptoms and the management requirements. The main influences on successful coping and adjustment appear to be the need for health care support, and the impact on physical functioning and capacity to fulfil social roles and responsibilities (AIHW, 2009). Children with asthma access all health care services more frequently (ACAM, 2008, Spurrier et al., 2003b) and experience a high rate of hospitalisation (ACAM, 2008). At an individual family level, the impact of asthma is also significant, and varies according to the severity and frequency of asthma in a child.
Children with asthma experience a lower level of self-assessed health (ACAM, 2008), potentially due to disturbance in the activities of day-to-day life. Asthma can cause moderate to extreme interference with daily activities in up to 12% of children with asthma (New South Wales Health, 2008). For instance, children with asthma are almost twice as likely to require time off school due to illness than children without asthma (ACAM, 2008, Spurrier et al., 2003a). Children may also be less physically active (ACAM, 2008, Marks et al., 2007), and have disrupted sleep (ACAM, 2008, Marks et al., 2007, Poulos et al., 2005).
Parental quality of life is also affected. Parents report lower levels of health related quality of life, particularly when they perceive a greater burden from the day-to-day management requirements (Fiese, Wamboldt, & Anbar, 2005), a higher level of asthma severity in their child (Walker et al., 2006) or when their child's asthma is inadequately controlled (Dean, Calimlim, Kindermann, Khandker, & Tinkelman, 2009). As children have higher rates of absenteeism from school, parents also take leave more frequently from their employment to care for children (Dean et al., 2009, Woolcock et al., 2001).
Given the impact of asthma on Australian families and the community is considerable, it is important that the management of asthma management is optimised, in order to reduce the burden of disease and improve health and social outcomes for both children and their parents.
Parent asthma management during middle childhood
Responsibility for asthma management is primarily held by parents, until children have attained the required level of cognitive and psychosocial development to manage their own illness. In order to optimise asthma management in middle childhood, parents need to learn and master several complex areas of management, including appreciating asthma as an illness, understanding the treatment of asthma, monitoring and responding to symptoms, supporting other carers, managing asthma in the context of family life and guiding the development of self-management responsibility in their child.
Understanding asthma
When a child is newly diagnosed with asthma, parents are required to develop knowledge of asthma, the signs and symptoms of increasing severity, and the factors that can influence the onset of asthma symptoms (National Asthma Council, 2006). Recognising early signs and symptoms of increasing asthma severity and respiratory distress are important to ensure that parents can identify a worsening situation, and seek help early to prevent deterioration (Horner, 1998, Lee et al., 2006, Meng and McConnell, 2002, Morawska et al., 2008, Sullivan, 2008, Yoos et al., 2003a). Although asthma is a chronic condition, the pattern of symptoms do not manifest in all children in the same way. Amongst children there is variation in the degree of severity of asthma, pattern of asthma and in the factors that can trigger an exacerbation of asthma (GINA, 2004, National Asthma Council, 2008). Therefore there is a need for patients to tailor information to their child's situation. Furthermore, the pattern of asthma can change as the child grows (National Asthma Council, 2008). Recognising their own child's pattern of asthma (Horner, 1998, Horner and Fouladi, 2003, Sullivan, 2008), as distinct from another illness patterns (Morawska et al., 2008) is an important aspect of disease knowledge that parents need to master.
Understanding asthma treatment
Medications to relieve and prevent asthma symptoms are the mainstay of treatment in asthma. Medication knowledge and skill are critical areas of mastery for asthma management by parents. Therefore, learning about the use, action, dosage and potential adverse effects of medication is a key area of parental responsibility (Barton et al., 2005, Horner, 1998, Jones et al., 2000, Sullivan, 2008). In reality, parents do not always understand medications used in the treatment of asthma (Barton et al., 2005, Chan and DeBruyne, 2000, Jones et al., 2000) and have concerns about the effect that asthma medications may have on their child (Barton et al., 2005, Chan and DeBruyne, 2000). Lack of understanding or confidence in medication may affect adherence to medication regimes. Those who lack confidence in the use of asthma medications may not use them correctly or delay their use, potentially leading to worsening asthma symptoms in their child.
Parents need to learn skills in the technicalities of medication administration (Barton et al., 2005, Horner, 1998, Jones et al., 2000, Sullivan, 2008) and to elicit the cooperation of children in the administration of their medications. Administration of medication is an area that parents can find challenging (Barton et al., 2005, Sullivan, 2008) as children are not always willing to cooperate with medication administration.
While parents are required to understand medication as treatment, they are also required to make judgements regarding the response of the child's symptoms to the various medications, particularly as both reliever and preventer medications may be prescribed on an add needed basis, rather than as a regular medication. These judgements include knowing when to make changes in medication, including commencement and cessation of medication and when to seek assessment by health care providers (Lee et al., 2006, Meng and McConnell, 2002, Morawska et al., 2008, Sullivan, 2008).
Monitoring symptoms and responding to changes in condition
Most parents learn to recognise increasing asthma severity and to monitor changes in symptoms and response to medications (National Asthma Council, 2006). However, this can take time and can be challenging (Barton et al., 2005, Butz et al., 2005, Meng and McConnell, 2002, Spurrier et al., 2003b, Sullivan, 2008, Yoos et al., 2003a). In the early stages of learning to manage asthma, parents are more focussed on responding to and managing acute exacerbations of asthma, than with prevention and early recognition (Buford, 2004, Horner, 1998, Palmer, 2001). When faced with increasing severity of asthma, parents can struggle with identifying the right course of action to take (Meng & McConnell, 2002). As parents become more adept and confident at recognising the pattern of asthma in their child, they begin to take action earlier to prevent exacerbations of asthma (Barton et al., 2005, Brazil and Krueger, 2002, Buford, 2004, Clark et al., 2001, Horner, 1998, Palmer, 2001).
In order to assist parents in management, written asthma action plans are used by health care professionals to guide parents in their management of childhood asthma. The plan includes guidelines for recognition of increasing asthma severity, the use of medications both on a regular basis and during increased symptoms of asthma and advice on when to access health care services (National Asthma Council, 2008, Yoos et al., 2003b). Although there is clear evidence that asthma action plans improve health outcomes (Gibson & Powell, 2004), less than 30% of Australian children with asthma who are aged 5–11 years possess one (ABS, 2006).
Managing other carers
In order to manage asthma in their absence, parents coordinate asthma management in collaboration with key personnel in school, health care and other environments (Barton et al., 2005, Buford, 2004, Horner, 1998, Kieckhefer and Ratcliffe, 2000, Lee et al., 2006, Meng and McConnell, 2002, Morawska et al., 2008).
For parents, ensuring that school and other care personnel are able and willing to manage asthma in their absence is a challenging and often time consuming task (Lee et al., 2006, Morawska et al., 2008), but is also recognised by parents as a key strategy in successful asthma management (Horner, 1998, Palmer, 2001). Schools, out of school hours care and vacation programs are now actively encouraged to develop plans to manage asthma in children through national asthma programs (DePue et al., 2007, Evans et al., 2001, Gau et al., 2002). However it is taking time to establish full participation. For example, only 40% of Australian schools are fully participating in national asthma programs (Department of Health & Ageing, 2008). Therefore, parents of children with asthma need to collaborate with others who care for their child in order for their asthma to be managed during parental absences. To be able to coordinate and guide other adults in the management of asthma, parents need to first establish their own confidence in managing asthma (Kieckhefer et al., 2009, Palmer, 2001).
Managing asthma in the context of family life
In addition to mastering knowledge and skills of asthma management, parents are required to undertake management of their child's illness in the context of family life. Parents consult with health care professionals on asthma management for their child, both for daily management and during acute exacerbations of asthma (Barton et al., 2005, Buford, 2005, Kieckhefer and Ratcliffe, 2000, Lee et al., 2006, Sullivan, 2008). Whilst parents recognise the benefits of consultation, managing appointments in the context of other family, work and personal demands is challenging (Buford, 2005, Kieckhefer and Ratcliffe, 2000).
Parents face significant challenges incorporating the management of asthma into daily life (Barton et al., 2005, Horner, 1998, McQuaid et al., 2007, Meng and McConnell, 2002, Sullivan, 2008), especially if the parent lacks confidence in managing asthma (Bursch et al., 1999, Grus et al., 2001). Parents have described the difficulties of managing a child with asthma in balance with needs of other family members, particularly during times of illness (Barton et al., 2005, McQuaid et al., 2007, Sullivan, 2008). While parents express the need for their child to lead as ‘normal’ a life as possible, some activities present challenges, such as travel for holiday purposes (Barton et al., 2005), sport and other leisure activities (Brazil & Krueger, 2002).
Understanding the development of self-management capacity in middle childhood
The development of self-management capacity becomes increasingly important as children spend more time away from their parents. In middle childhood, the major responsibility for asthma management is taken by parents, whilst at the same time parents aim to foster self-management responsibility in their child (Buford, 2004, Kieckhefer et al., 2009, McQuaid et al., 2001, Orrell-Valente et al., 2008, Wade et al., 1999). Importantly, the child needs to have attained a certain level of development in order to take on some asthma management responsibility.
During middle childhood (approximately 5–12 years of age) children take important steps in developing independence, individual identity and the capacity to cope with their life circumstances. There are several key elements in middle childhood development that are important for parents to consider in the management of illness in their child. These elements include development of a sense of self, more complex cognitive operations such as an understanding of time and greater social independence.
By middle childhood, children are aware that they are physically separate individuals and distinctly different from other people. Children begin to understand that another individual may have different thoughts, beliefs and values from their own (Doherty, 2009, Wimmer and Perner, 1983). For children with a chronic illness such as asthma, they become increasingly aware that having a chronic illness makes them different from other children.
Logical thinking capacity and a greater appreciation of the concept of time emerge in middle childhood (Piaget & Inhelder, 1969). The development of logical thought and comprehension of time allows children to plan, problem solve and make decisions at a higher level than before (Piaget & Inhelder, 1969). Although unable to abstract, children of this age group are able to remember tasks of daily living, such as getting dressed for school or to pack their reliever inhaler. At times, children still need reminding to commence and complete tasks.
As children develop a more complex level of cognition, they become less dependent on their care giver, and more independent in their social interactions (Erikson, 1995, Karpov, 2005, Piaget and Inhelder, 1969). While increasingly independent of family, the role of parents in facilitating development in children remains important. Children learn from parents and others through guiding, modelling and support in various learning tasks and activities of daily life (Karpov, 2005) and develop a sense of self through achievement, mastery and cooperation with others (Bandura, 1997, Erikson, 1995). For example, gross and fine motor development is quite refined by middle childhood, and most children can begin to develop capacity to self-administer inhaled medications via a spacer device or via a turbuhaler with parental guidance (National Asthma Council, 2006). Importantly, peer groups and social standing become increasingly influential on the child's sense of self in this age group (Erikson, 1995, Heath, 2009). While children might master the skill of medication administration, they may be reluctant to take medications in the view of peers.
Parents can continue to influence the acquisition of skills and a sense of competence in their children by providing achievable learning opportunities, monitoring the development of competence and achievement, providing help, emotional support and encouragement (Berk, 2009, Heath, 2009). This is important as the development of competence in a child enhances their sense of self-worth and their confidence. Children with asthma are therefore able to take on more responsibility for recognising asthma symptoms, initiating the use of medication and remembering to take regular preventative medications than previously. The development of cognition is gradual, and processes vary between individuals and thus parent involvement in the management of asthma remains important throughout middle childhood.
To date, little is known about the division of responsibility for the management of chronic illnesses between parents and children or what parents need to do in order to facilitate child management of asthma. Few studies have been published that examine the allocation of asthma self-management tasks between parents and children with asthma (Buford, 2004, Kieckhefer et al., 2009, McQuaid et al., 2001, Orrell-Valente et al., 2008, Wade et al., 1999). There is some evidence that children's responsibility for asthma management increases with age and that children rate themselves as more responsible for asthma management than their parents perceived them to be (McQuaid et al., 2001, Wade et al., 1999). Furthermore, parent confidence in management of the illness may influence the development of child responsibility for management (Clark et al., 2001, Kieckhefer et al., 2009).
Implications for practice and research
When working with parents and children with asthma, nurses and other health care professionals need to consider that the development of parent asthma management confidence occurs over time and is an important precursor to parents guiding the self-management of asthma by their child. Key areas of challenge that parents may face in the management of asthma include recognition of increasing asthma severity, understanding and using medications, and preventing exacerbations of asthma, coordinating care and fostering the development of asthma management capacity in their child. It is these areas that parents find difficult that are perhaps some of the most important areas of focus for health care professionals when providing parents with education and support. Learning to incorporate asthma into family life and managing the responsibility for asthma management in child development are added complexities faced by parents during middle childhood. Furthermore, health care professionals need to consider the developmental level of the child when providing asthma management education and guidance to parents and children on asthma management. The process by which parents support the development of self-management responsibility has not been widely studied, is not well understood and warrants further investigation.
Summary
For the foreseeable future, asthma remains a significant chronic illness for Australian children and their families. There is still room to improve health outcomes for children with asthma, particularly in relation to utilisation of health care services and quality of life. Managing asthma involves a complex range of knowledge, tasks, activities and responsibilities that vary between individual contexts. As a result of this complexity, parents encounter a range of challenges in managing childhood asthma. These challenges if not mastered, may adversely affect parental capacity to manage childhood asthma. In turn, this can limit the capacity of parents to foster reasonable levels of child responsibility for asthma management. Subsequently, it is important that future research into parent management focuses on strategies to overcome those elements of asthma management that parents find challenging and ways in which to support the development of self-management capacity in children with asthma.
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PII: S1322-7696(10)00025-9
doi:10.1016/j.colegn.2010.04.006
Crown Copyright © 2010. Published by Elsevier Inc. All rights reserved.
