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Don't forget to pack my EpiPen[R] please: what issues does food allergy present for children's starting school?

Introduction

Starting school is an important event in the lives of young children and their families, and can be complicated by food allergy, because of the increased risks due to the allergy and the accompanying uncertainties surrounding children's safety outside the home.

Food allergy is a type of health condition in which young children develop an allergic reaction to commonly available foods such as cow's milk, eggs, peanuts, tree nuts and seafood, even when consumed in small amounts. The reactions can be mild--with sneezing, watery eyes, welts, and swelling of the face and mouth--or severe, involving breathing difficulties and collapse leading to fatalities or near-fatalities, a condition known as anaphylaxis (Teufel et al., 2007). At present, there is no cure for food allergy or anaphylaxis, and therefore the recommendations are to avoid potentially dangerous food/s, and administer the adrenaline auto-injector (known as EpiPen[R] or AnaPen[R] in Australia) in the case of anaphylaxis (Bertine, Block & Dubois, 2009).

Unsurprisingly, parents and children affected by food allergy experience high levels of anxiety owing to the potential risks and consequences (Cohen, Noone, Munoz-Furlong & Sicherer, 2004; Hu & Kemp; 2005; Lyons & Forde, 2004; Sanagavarapu, 2004; Sicherer, Noone & Munoz-Furlong, 2001) and tend to restrict social activities for the sake of children's safety, which obviously compromises the families' and child's quality of life (Cohen et al., 2004; Primeau et al., 2000; Sicherer et al., 2001).

Most importantly, the risks of food allergic reactions increase outside the home, and about 85 per cent of deaths caused by anaphylaxis happened away from the home environment (Bock, Munoz-Furlong & Sampson, 2007). Even within an environment where the primary focus is on children and their welfare, adequate measures to manage this complex condition may not be in place at all times. While young children are exposed to many risks, such as road accidents, the fear of an unpredictable death from a food allergy is highly stressful (Kemp & Hu, 2008). It is understandable that parents and children may have significant and valid concerns about starting school and that parents, being necessarily highly vigilant, will be anxious about leaving their child in the care of others.

The number of children with diagnosed food allergy attending Australian schools is increasing. For example, in the ACT, one in 30 children has a diagnosed nut allergy at the time of starting school (Kljakovic et al., 2009). However, the arrangements for managing food allergy in some Australian schools are inadequate (Boros, Kay & Gold, 2000). Therefore, educators need to understand the concerns of families and children and offer support to ease their smooth transition to school. Similarly, parents need to have confidence in the school's ability to deal with food allergy, knowing there are guidelines to prevent and manage food allergy in Australian schools. Despite guidelines to manage food allergy existing in Australia (Australasian Society of Clinical Immunology and Allergy and state departments of education and early childhood), it is not yet clear whether parents are aware of their existence; what their views might be on the efficacy of those guidelines; and what specific issues, concerns, and support needs of children and their families are considered when children with food allergies start school. In this paper, I reviewed the literature on food allergy to identify the need for research on starting school with food allergy. From the review, I also drew implications for school communities.

Food allergy and anaphylaxis: its prevelance

Food allergy is the body's adverse reaction to natural foods, such as cow's milk, eggs, peanut, tree nuts (e.g. walnuts, cashews), sesame seeds, fish, shellfish (e.g. prawn, lobster), wheat and soy (Anaphylaxis Australia Incorporated, n.d.). It is often confused with food intolerance, irritable bowel syndrome and other gastric symptoms (Teufel et al., 2007). But, food allergy reactions involve immune system responses, and anaphylaxis is 'a severe, life threatening, generalized or systemic hypersensitivity reaction' (Sampson et al., 2006, cited in Kastner, Harada & Waserman, 2010, p. 435) and is also 'a serious allergic reaction that is rapid in onset and may cause death' (Johansson et al., 2001, cited in Kastner et al., 2010, p. 435). In the case of anaphylaxis, children need prompt administration of the lifesaving adrenalin auto-injector. The instructions on how to handle a food allergy emergency or anaphylaxis are set out in an Action Plan for Anaphylaxis, prepared by an immunologist or general practitioner. Most allergic reactions are mild to moderate and do not require an adrenalin auto-injector, and about 20 per cent of the reactions that occur in child care or school settings are minor (Sicherer, Furlong, Munoz-Furlong, Banks & Sampson, 2001, cited in Hu & Kemp, 2005). But the concern with anaphylaxis is that it is difficult to predict when a mild or moderate allergic reaction will progress to being life-threatening Anaphylaxis can be difficult to identify, owing to the variations in its symptoms (Kastner et al., 2010).

Food allergy is increasing in Australia, particularly in infants and preschool-aged children (Kemp & Hu, 2008; Kljkovic et al., 2009). Despite the constraints in undertaking research studies on the prevalence of food allergy, because of small sample size, and reliance on skin-prick test and parental reports (Osborne et al., 2011), a few recent Australian studies indicated that one in 10 infants studied in Melbourne have diagnosed food allergy to peanuts, egg, and sesame seeds (Osborne et al., 2011) and that about 3.3 per cent of the 3739 preschoolers studied in Canberra had a peanut allergy (Kljakovic et al., 2009). Currently it is estimated that, nationally, one in 20 children suffers from severe food allergic reactions (Anaphylaxis Australia Inc). While fatalities among preschool children are rare, the risks are greater for school-aged children (Kemp & Hu, 2008). The explanation for the higher prevalence of food allergy in young children seems to be a combination of limited immunity in childhood years (van Putten et al., 2006), increased exposure to novel foods (van Putten et al., 2006), and lack of exposure to germs that leads to lower immunity known as hygiene hypothesis (Yazdanbakhsh, Kremsner & van Ree, 2002).

While the explanations for the increasing prevalence of food allergy in children are varied, the consensus among researchers is that effective management of food allergy is paramount in saving lives (British Columbia, 2005). Consequently, Australian educators have a duty of care that requires them to understand food allergy, take it seriously, and manage it effectively in a school or prior-to-school setting.

Psychosocial impacts of food allergy on children and their families

Food is not just a medical or health issue; it has many economic and psychosocial consequences for families, children and communities. The economic costs of managing food allergy for societies can be enormous. Although currently there are no clear measures to understand these costs (Miles, Fordham, Mills, Valvorta & Mugford, 2005), in Australia, the costs to communities to manage food allergy are estimated to be 10 billion dollars (Australasian Society of Clinical Immunology & Allergy: ASCIA, 2007). There are also many psychosocial and cultural consequences, which are more difficult to measure.

Food allergy can have a direct effect on people's psychological wellbeing via biological or chemical reactions triggered by an allergic reaction, and an indirect effect through the stresses of coping with the allergy (Kelsay, 2003). In the case of children, the effects are also transferred through parents' stresses and coping mechanisms. Therefore, to understand the impacts of food allergy on people holistically, researchers need to adopt a 'bio-psychological perspective' that emphasises understanding food allergy from both biological and socio cultural perspectives (Engle, 1977, cited in DunnGalvin et al., 2006, p. 1337).

While the focus of research in initial studies of food allergy was on understanding the signs and symptoms, risk factors, and prevalence and diagnostic methods (e.g. Bishop, Hill & Hosking, 1990; Burks & Sampson, 1992; Sampson & Albergo, 1984), in recent studies there is an increased focus on understanding the psychosocial implications for families' and children's daily lives (e.g. Bollinger et al., 2006; Cohen et al., 2004; Primeau et al., 2000; Sicherer et al., 2001).

The literature indicated that parents need to scrutinise food labels and avoid cross-contamination of foods, and that they tend to put restrictions on social activities, such as eating in restaurants and travelling, to avoid children's exposure to potential risks (e.g. Avery, King, Knight & Hourihane, 2003). Further, parents experience higher levels of anxiety over the increased risks in out-of-home contexts (Akeson, Worth & Sheikh, 2007; Bollinger et al., 2006; Cohen et al., 2001; Kemp & Hu, 2008; Komulainen, 2010; Primeau, et al., 2000; Sanagavarapu, 2004; Sicherer et al., 2001). As a result, some parents opt to home-school their children (Bollinger et al., 2006), and others refuse to send their children to birthday parties or on school excursions (Primeau et al., 2000).

The impacts of food allergy on mothering were also highlighted, with the burdens tending to increase when mothers lack support from extended families or communities (Sanagavarapu, 2004). Mothers characterised their lives as 'living with risk, living with fear, worrying about children's well being, relying on resources and support networks, looking for control in their lived experiences and described their mothering as hard in some respects but it is not in other respects of caring for a child with food allergy' (Gillespie, Woodgate, Chalmers & Watson, 2007, p. 33).

Other daily concerns for families are related to children's poor nutritional intake, sleep difficulties, and management of health conditions and illnesses, such as diarrhoea, asthma, eczema, dermatitis, allergic rhinitis, eating problems and gastric disorders (Bertine et al., 2009; Bollinger et al., 2006; Komulainen, 2010; Hu & Kemp, 2005)--with all these issues having a significant impact on both families' and their children's emotional wellbeing or quality of life (Cohen et al., 2001). The quality of life is defined as 'the individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns' (World Health Organization, 1993, cited in Bertine et al., 2009, p.133). Health-related quality of life, on the other hand, is defined as 'the effects of an illness and its consequent therapies upon a patient as perceived by the patient' (Meltzer, 2001, cited in Bertine et al., 2009, p.133).

Food allergy impairs children's quality of life. Children reported issues with emotional wellbeing and their participation in school and other activities (Bock et al., 2007). Research with adolescents indicated that children with food allergies had higher levels of anxiety compared with their peers without allergies (Lyons & Forde, 2004) or with children with diabetes (Avery et al., 2003) or rheumatological diseases (Primeau et al., 2000). They also expressed feelings of insecurity and fear and were concerned that other people may disregard the seriousness of food allergy (Lyons & Forde, 2004). Adolescents reported psychological distress and ill-health including headaches, gastric problems, and dizziness (Sweeting & West, 2003). The common theme of their concerns was the constant need for vigilance over foods and their safety. Further, children did not like the extra attention that food allergies imposed and wanted to live normally (Marklund, Wilde-Larsson, Ahlstedt & Nordstrom, 2007). While there appears to be no Australian research on these issues, the evidence from overseas studies indicates that food allergy impairs both children's and their families' quality of life, with the restrictions it imposes on their social life and the need for constant vigilance and safety (Bock et al., 2007; Lyons & Forde, 2004; Sicherer et al., 2001). The quality of life of both parents and children is further diminished if children have other food-related diseases such as gastric symptoms, sleep disorders and so on (Marklund, Ahlstedt & Nordstorm, 2006).

While the psychosocial effects of food allergy are universal, its effects on children's health and emotional wellbeing are varied by the child's gender. For example, adolescent girls scored lower on health-related quality measures compared with boys (e.g. Marklund, Ahlstedt & Nordstorm, 2004, cited in DunnGalvin et al., 2006; Sweeting & West, 2003). Furthermore, the literature indicated that the psychological effects of food allergy can be varied by individual factors such as people's self-efficacy and their perceptions of health (Gecas, 1989, cited in Lyons & Forde, 2004).

Despite the variations in the effects of food allergy relating to background factors, the conclusion from many studies is that it affects both children's and their families' quality of life (e.g. Bertine et al., 2009). The next section explores the impacts of food allergy on children's experiences of starting school, as this is an important milestone in young children's and their families' lives.

Implications of food allergy for starting school

The literature suggests that parents' fears and anxiety can intensify during children's starting school (Mandell, Curtis, Gold & Hardie, 2002), because of the increased risks of food allergy outside the home (Bock et al., 2007) and in group care situations such as child care or school (Komulainen, 2010) and, as a result, transition to school can be 'anxiety provoking' (Gillespie et al., 2007, p. 34). Concurrent with the parents' fears, the arrangements for management of food allergy were noted to be inadequate in some schools in Australia (Bores et al., 2000) and elsewhere, for example in Scotland (Rankin & Sheikh, 2006, cited in Kastner et al., 2010). Importantly, some young children who start school at the age of four-and-a-half years (the starting age for schools in NSW) may not be able to tell their teacher immediately that they have an allergic reaction, but any delay in treatment could have serious consequences. For these reasons, it is not surprising that parents who tend to be highly vigilant will be anxious about leaving their child in the care of others.

People's increased awareness of food allergy, along with improvements in food labelling systems in Australia, should ease parents' anxiety, yet having to hand over the responsibility of affected children to others can still be quite stressful (Kemp & Hu, 2008), especially when transitioning from home to child care or school.

Starting school is an emotionally exhilarating event and the common feelings associated with it are excitement, anxiety and fear. Children's first experiences of transitions can have a profound impact on their psychological adjustments and later academic success (Alexander & Entwisle, 1988; Brooker, 2008; Hamre & Pianta, 2001; McClelland, Morrison & Holmes, 2000; West, Sweeting & Young, 2008). When beginning school, children are required to make many psychological, social and emotional adjustments. For example, they need to understand the rules of school, make new friends, learn to play cooperatively with peers, know the facilities and communicate their needs and concerns, learn to relate to their classroom teacher and other adults, and to be independent and self-reliant in a school setting (Perry, Dockett & Howard, 2000). Transition to school is a very complex process for children, and therefore for their families (Perry et al., 2000; Perry, Dockett & Nicholson, 2002; Sanagavarapu & Perry, 2005; Sanagavarapu, 2010).

Starting school can be even more complicated for families affected by children's food allergy, owing to the added issues surrounding their safety and health in a school setting. First, schools may not be totally safe if children are exposed to potential allergy-causing foods brought in by other children or adults. Second, parents worry that they can be perceived by the school community as paranoid and overprotective, their child may be singled out in relation to his/her special dietary needs, their child may not be able to take part in all school and educational activities involving foods and that their child may succumb to peer pressure to eat allergy-inducing foods. Third, issues of nutritional intake and growth and development (Christie, Hine, Parker & Burks, 2002) as well as illnesses can impair the children's socio-emotional development and cognitive processing abilities (Marshall, Hara & Steinburg, 2000), with consequent impairment to their adjustment to school.

'Parents who perceive a child as frail or vulnerable may be overly protective' (Currie, 2005, p. 118). This could impact on children's ability to operate individually and their social adjustment at school, and can also lead to behavioural problems (Currie, 2005).

The excitement associated with starting school can be replaced by anxiety and fear for these children and families. However, there is no research in Australia and elsewhere that specifically investigated the implications of food allergy for starting school, although previously a few studies investigated the arrangements for food allergy management in schools (Boros et al., 2000; Young, Munoz-Furlong & Sicherer, 2009). Therefore it is vital to explore the scope for research on starting school with a food allergy.

Implications for research and school communities

Understanding the concerns and support needs of families and children affected by food allergy can provide educators with guidance on supporting their smooth transition to school. The ecological theoretical framework (Bronfenbrenner, 1979) acknowledges that enabling a smooth transition to school is a responsibility shared between educators and families and that 'children are part of a larger social system at the transition to school' (Niesel & Griebel, 2006, p. 23). It further highlights the importance of support from the school community in easing families' and children's anxiety. This support can be interpersonal, through communication, or instrumental (Hanlin, 1991), for example through the provision of information on the prevention and management of food allergy at school and the incorporation of special dietary and health needs of children in school activities.

The health and wellbeing of children affected by food allergy in a school setting is dependent on educators' knowledge; therefore they need training on food allergy management and emergency treatment. While risk of a food allergic reaction can be reduced, it can never be totally removed. It is now mandatory for all school teachers in Victoria and Western Australia who have a child at risk of anaphylaxis in their care to be trained in the prevention, management and emergency treatment of food allergy and anaphylaxis. The training is available in both face-to-face and online modes, although the former is preferred by the Australasian Society of Clinical Immunology and Allergy (ASCIA) and Anaphylaxis Australia Inc. The Anaphylaxis e.training is available for educators in school and prior-to-school settings in Australia and New Zealand, at no cost. It is developed by the ASCIA, in liaison with the Western Australian and New South Wales (NSW) health departments, and will be of help to educators before completing face-to-face training (ASCIA).

As well, there are guidelines for the prevention of food allergic reactions in all schools and childcare centres in Australia (ASCIA and state departments of education and early childhood) which provide details on how to prevent and respond to food-related emergencies in all government and non-government schools (Hu & Kemp, 2005).

Parents can feel confident to leave their children at a school or prior-to-school setting if they know that educators are knowledgeable about food allergy and can handle food-related emergencies. While there are guidelines to manage food allergy, it is not yet clear whether parents are aware of their existence and what their views might be en the efficacy of those guidelines.

Hence, research en starting school with a food allergy is urgently needed in Australia; it is important that researchers and schools understand parents' concerns and support needs in relation to starting school, along with children's perspectives (Fargas-Malet, McSherry, Larkin & Robinson, 2010).

Such research resonates with the current emphasis on the promotion of children's health in the early childhood years (Almqvist, Hellnas, Stefansson & Granlund, 2006). The issues faced by families and children with food allergy are acknowledged by both state and federal governments in Australia, and management of Anaphylaxis across the nation was a major point of Federal Parliament discussion in 2006 (Anaphylaxis Australia Incorporated). Further, there is a proposal to support a national policy for children's services and schools in the management of Anaphylaxis (Anaphylaxis Australia Incorporated). In light of this, research en starting school with food allergy in Australia is urgently needed, findings from which will enable educators to provide for children's present and future health and wellbeing.

Acknowledgements

Thank you to the following people for their comments en the paper: Ms. Maria Said and Ms. Geraldine Batty of Anaphylaxis Australia Inc; Ms. Annette Mclaren of the University of Western Sydney; Dr. Robert Brown of WriteWay Consulting Pty Ltd; and the reviewers for their valuable feedback.

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Prathyusha Sanagavarapu

University of Western Sydney
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Date:Jun 1, 2012
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