Khadj Rouf and Kathryn Evans reflect on the challenges of parenting children with severe allergies.
Allergy – Insider perspectives
The prevalence of food allergy is rising, and recent tragedies highlight that concerted action is still needed to help severe allergy sufferers. These are anxious times for sufferers and their families. Should we see such anxiety as an adaptive and understandable response to a society that has not yet figured out how to safeguard those with allergy?
Five years ago, we wrote for this magazine from the dual perspective of clinical psychologists and parents of children with severe food allergies. Prompted by the steady stream of contact we’ve had from parents and carers since then, we felt it was time for an update. Things are improving – there is better public understanding of severe allergy, steps forward in clearer food labelling, and a growing literature on the psychological impacts of living with allergy. Yet we argue for more contextual understandings of psychological impacts, particularly anxiety, both for parents and young allergy sufferers.
Demand outstrips supply
Across Europe, there is an increase in allergic conditions that is predicted to continue (EAACI, 2016). The number of severe reactions is also rising – between 1992-2012, there was more than a 600 per cent increase in UK hospital admissions for anaphylactic reactions (Turner, 2015), a trend which has continued, with 4836 admissions to A&E in England between 2017-2018 (NHS digital, 2018).
In terms of intervention, there is some promising research around graded exposure to allergens to build up tolerance to triggers. However, the main advice is to avoid allergens and make lifestyle adaptations. The rate of increase in allergic responses means that the demand for help, particularly to address psychological impacts, is outstripping supply. The NICE guidance for allergy was reviewed in 2018 but not updated; it still doesn’t contain enough information about the psychosocial impacts of allergy, nor psychologically-informed interventions to help people live well.
For many, adapting their lifestyles is getting somewhat easier. Thanks to the tireless efforts of organisations such as the Anaphylaxis Campaign, there is now much clearer allergen labelling. However, tragic cases, such as Natasha Ednan-Laperouse’s death, are a sobering reminder that eating food prepared by others in restaurants or food outlets, can be potentially catastrophic. Fatalities are often the result of accidents, where the allergy sufferer may have been reassured that food was safe, either by another person or food mislabelling. This has renewed discussions about food industry responsibilities and led to the planned introduction of ‘Natasha’s Law’.
The discussion about parental anxiety and its potential negative impacts on children with severe food allergies often distils into a narrative about maternal over-protection (e.g. Chow et al., 2015). However, research can miss the wider social context for those trying to live in what can be a very challenging landscape (see O’Farrell, 2017, for a vivid account of navigating life with a child challenged by severe allergies). In reality, parents have to do a great deal of background work to enable their child to live safely. Everything happens within a context, and parental anxiety can be directly linked to micro-interactions across multiple relationships and settings. It is crucial not to pathologise parents, and to understand that anxiety is influenced by developmental stages and relationships.
Navigating family and social life
We’ve adopted an ethnographic stance of ‘rendering strange what we take as given’ (Toren, 2003) to explain what it’s like to live with a child with severe allergy; this expands beyond the individual psyche, into the practical, emotional, relational and social impacts. We have tried to crystallise what can make it so stressful to adapt to life with anaphylaxis.
Firstly, food plays a central role in survival. Humans need to eat. In society, rules around food preparation, including the separation of certain elements, are culturally sanctioned or normative. This engenders trust that others will observe those rules, and this trust and certainty is soothing (Wheater, pers.comm.). However, the main advice for those with severe allergy is avoidance of triggers; for some people, this includes not touching the allergen or breathing it in. Avoiding food is hard.
Unless we grow our food and cook from scratch, we all rely to varying degrees on pre-prepared foods. Here the practical and stressful aspects of safety arise, such as checking and rechecking labels for hidden allergens and deciphering what specifically is meant by ‘may contain’. This is particularly stressful in the wake of recent tragedies or personal experiences of eating food deemed safe which has caused anaphylaxis.
Suffering with allergy can impact on emotions, such as trust. A sufferer may experience a tense relationship with food if they aren’t confident of its safety, which can also challenge their relationship with their own bodily reactions, causing a feeling of invisible difference. Trust in other people and with social spaces may also be compromised. As Cridland (2017) said, ‘trust relating to food is personal and intimate, since it requires trusting another person to prepare food that will not cause harm as it is incorporated’.
Mistakes and miscommunication will occur, especially if there are many links in the chain between consumer and manufacturer. Places that are not allergy-friendly ‘shrink’ for people with allergies; they can’t fully participate in them. According to Cridland (2017), ‘comfort, anxiety, safety, and trust can imbue spaces, leading them to be perceived as “spaces for me” or “spaces not for me”’.
This impacts on the individual, but of course food has family significance too. Cridland (2017) said: ‘Food is social… food carries meanings and values, is symbolic, and communicates relationships between people and between individuals and society.’ Food is central to kinship – meals connect families through shared time, conversation and forging attachments. Meals are acts of memory-making; certain foods can be highly evocative of childhood and associated with emotions. Sharing food is also culturally and socially significant – personal cultural milestones or religious festivals are often marked with food. What we eat and what we don’t eat can signify faith or cultural identity.
Severe food allergy disrupts some of the usual patterns and rituals around food. Practical impacts on family life may include the family changing its dietary habit entirely. Parents of younger children often have to plan ahead, anticipating the unexpected: a delayed journey can’t have a Plan B that involves spontaneously eating in a café. In addition to carrying food and back up medicines there may also be material impacts as allergy-friendly foods can be more expensive.
There can also be relational and emotional impacts, as parenting happens in a social and familial context. There has been focus on parental anxiety and its impact on children, and the notion of adaptive anxiety – the ‘Goldilocks Principle’ – a ‘just right’ level of anxiety (Mandell et al, 2005). But this can be a difficult balance – parental anxiety needs to be viewed in a context that pays attention to gender, culture and an awareness of wider society.
We’ve had both highly positive and negative responses to adapting. When children are very young, parents act as champions for ensuring the safety of their children around food. Gender biases in caring responsibilities still results in women carrying the bulk of this impact, and at times, the negative stereotyping of being ‘over-anxious’.
The term ‘allergy’ covers a large territory from intolerance to anaphylaxis, which can cause stress in itself. Two people in conversation about allergy safety may not be talking about the same thing. Increased public discussions about food intolerance and self-diagnosis of allergies may raise awareness on one level, making these more ‘mainstream’. However, it also leads to the assumption that ‘allergy’ means ‘intolerance’ or ‘preference’ rather than ‘medical danger’. Both public and scientific understandings of allergy are still in their early stages.
Against this backdrop, representations of allergy in films and programmes can be unhelpful – allergy is often shorthand for being odd, faddy, eccentric or high maintenance. Anaphylaxis is often portrayed as comic, as in Hitch (2005), Alan Partridge (episode 5, 2019) and a criticised depiction in Peter Rabbit (2018). These stereotypes can make it uncomfortable to have discussions designed to keep children safe around food. We think it can also impact on how young people take up the reins of self-care around allergy when parents pass on responsibility to their children. These changing dynamics will need thought across the lifespan. (See also Audrey DunnGalvin’s article in this issue).
Anxiety for sufferers and carers is affected by everyday interactions between people. Our 2014 research identified ‘having confidence in others’ and efforts to ‘keep life normal’ as themes based in relationships and contexts. But if micro-interactions involve being misunderstood, minimised, catastrophised or even mocked, it’s understandable that parental anxiety can heighten.
Whilst home can be a safe haven for children, going into social spaces can become very stressful. For example, a 12-year-old with a peanut allergy suffering an airborne reaction to peanuts at school could result in the whole class crowding round to see what happens. Positive micro-interactions include teachers conducting joint risk assessment with parents in advance of residential trips, communicating about menu choices and an emergency drill. Cridland’s (2017) ethnography of Celiac Camp suggests that supportive spaces where allergy is the norm can be very helpful, re-codifying communal eating into a source of comfort, rather than anxiety. Yet exclusion can occur – anecdotally, children withdraw and don’t want to ‘make a fuss’ during allergic reactions, to avoid social embarrassment. These behaviours can reduce parental confidence that the child will seek help during medical crisis.
Wider relationships, such as those with extended family and friends, also influence life with allergy, including likely discomfort in adapting to post-diagnosis life. Parents may feel more self-conscious, and friends more worried about their role. For instance, cooking for others, ‘traditionally seen as a source of social bonding, is even seen as a source of stress and anxiety’ (Cridland, 2017). There can be lasting negative relational effects on both sides, including feeling different or self-conscious, or missing out on social events. Social relationships may reconfigure and be asymmetrical, as the impact of severe allergy can spread into all areas of life.
The Anxiety Seesaw
Given the contextual, relational and developmental aspects of living with allergy, there are times when appearing ‘over-anxious’ is adaptive. Anxiety may fluctuate depending on life transitions, but also in daily micro-interactions where parents are expected to entrust the care of their children to others, who may know far less about allergy. This can lead to what we call The Anxiety Seesaw [see over]. Low allergy awareness in another person can lead to high anxiety in a parent. If this is pathologised, parents can feel that they have to avoid situations, such as eating out. High allergy awareness in others can lead to lower anxiety for parents and sufferers, because they feel that the other person ‘gets it’ and will be helpful. Shared responsibility for allergy management can create good ‘psychological safety’.
Framing parental anxiety in terms of the probability, cost, coping and rescue anxiety model developed by Beck et al. (1985) provides an opportunity to think about what makes social spaces, and the rituals within them, safe for allergy sufferers.
Allergy: everybody’s business
Since allergy rates are predicted to continue rising, people need help navigating the myriad impacts of severe allergies across a number of domains. This requires looking at context and the need for adapted and inclusive social spaces. Given the potentially fatal nature of anaphylaxis and the catastrophic consequences of seemingly ‘minor’ accidents, responding to allergy should be treated as a safeguarding issue. This means shifting opinions, and proactive, psychologically informed risk assessment requiring prevention, as well as emergency responses.
In Jim Reason’s words, ‘the single most important factor is trust’. Creating safe cultures benefits everyone, not just one group. Safe environments are reflective and they learn. They are inclusive – everyone has a stake in creating and maintaining a psychologically and physically safe environment. The British Psychological Society’s 2018 Safeguarding document embeds Reason’s thinking and has potential applications within different settings. The diagram illustrates the multi-systems approach to safeguarding, also applicable to young people living with allergy and moving across different systems, such as schools.
Whole school approaches ensure a resilient and sustainable response to allergy (Dunn, 2018). Schools should be well-informed and include pupils and parents in co-produced strategies. Risk assessment tools need to be clear and ensure that allergy is thought of in every domain – how can children be included in every sphere through adapted and safe means? This example chimes with Cridland (2017) on reconfiguring social dynamics: there may inevitably be tensions, but such an approach can lead to productive new routines and rituals, which ensure that inclusive community activities continue.
Still much to be done
We’re struck by the positive improvements over the last five years, but there’s still much to be done. Responding helpfully to people affected by allergy involves the interplay of issues which are deeper than apparent in emerging research on allergy. Sufferers can face the difficulties of living with invisible disability, and the relational issues which are raised with one’s own body, with food and with community. For parents, manifestations of anxiety can be the result of poor experiences at practical, material and relational levels. We call for a more nuanced perspective on anxiety within a social context, and for more help for families making adjustments and negotiations across the lifespan.
Our experiences, combined with emails from parents and carers asking for advice, and the predicted increases in allergy rates, convince us that more action is needed to expand UK allergy services – and to ensure that psychologists are employed within them. We hope this collection of articles might stimulate discussion about how psychologists working in different settings might respond to the needs of children, young people and their families living with severe allergy.
Dr Khadj Rouf is a Consultant Clinical Psychologist at Psychological Services, Oxford NHS Foundation Trust
Dr Kathryn Evans is a Consultant Clinical Psychologist at the Oxford Institute of Clinical Psychology Training and Research, Oxford Centre for Psychological Health, Warneford Hospital, Oxford
"We are very grateful to the following people for their advice and comments during the writing of this article: Tracey Dunn, Head Teacher, Fitzmaurice Primary School, Bradford-on-Avon; Dr Kitty Wheater, Postdoctoral Affiliate, Institute of Social and Cultural Anthropology, University of Oxford."
Illustration: Napal Naps
BBC (25 June 2019). Pret allergy death: Parents 'delighted' by 'Natasha's law' plan
Accessed 01.07.19. https://www.bbc.co.uk/news/uk-politics-48752388
Beck, A. T., Emery, G., & Greenberg, R. L. (1985). Anxiety disorders and phobias: A cognitive perspective. New York: Basic Books.
BPS. (2018). Safeguarding Children and Young People: Every Psychologist’s Responsibility. Leicester: BPS.
Chow, C., Pincus, D.B., & Comer, J.S. (2015). Pediatric Food Allergies and Psychosocial Functioning: Examining the Potential Moderating Roles of Maternal Distress and Overprotection. Journal of Pediatric Psychology, 40(10), 1065–1074. Accessed 21.4.19 Doi: 10.1093/jpepsy/jsv058
Cridland, M. (2017). 'May contain traces of' An ethnographic study of eating communities and the gluten free diet. Lund, Sweden: Media-Tryck, Lund University, Sweden.
Dunn, T. (2018, November). Managing anaphylaxis: a head teacher’s perspective. Paper presented at Healthcare Professionals Conference on The Psychological Impact of Allergy, The Anaphlaxis Campaign.
EAACI (European Academy of Allergy and Clinical Immunology). (2016). Tackling the allergy crisis in Europe - Concerted policy action needed. Brussels: EU Liaison Office.
Evans, K., & Rouf, K. (2014). Living with severe food allergy. The Psychologist, 27(5), 334-337.
Haahtela, T., Holgate, S., Pawankar, R., Akdis, C. A., Benjaponpitak, S., Caraballo, L., Demain, J., Portnoy, J., von Hertzen, L. & WAO Special Committee on Climate Change. (2013). The biodiversity hypothesis and allergic disease: world allergy organization position statement. World Allergy Organization Journal, 6:3. Accessed on 21.4.19: http://www.waojournal.org/content/6/1/3
Hitch. (2005). Allergic reaction scene. Accessed on 29 March 2019: https://www.youtube.com/watch?v=7jXDMcqsc38
Mandell, D., Curtis, R., Gold, M., & Hardie, S. (2005). Anaphylaxis: How do you live with it? Health and Social Work, 30, 325-335.
NHS Digital. (2018). https://digital.nhs.uk/data-and-information/find-data-and-publications/supplementary-information/2018-supplementary-information-files/hospital-admissions-for-allergies-and-anaphylactic-shock
NICE. (2011). Food allergy in children and young people. Clinical Guideline no.116. London: Author.
NICE. (2018). 2018 surveillance of food allergy in under 19s: assessment and diagnosis (NICE guideline CG116). London: Author
O’Farrell, M. (2017). I am, I am, I am. London: Headline.
Pawankar, R. C. G. (2013). The WAO White Book on Allergy (Update 2013).
Reason, J. (1997). Managing the Risks of Organizational Accidents. England: Ashgate Publishing.
Reason, J. (1998). Achieving a safe culture: Theory and practice. Work & Stress, 12(3), 293–306.
Reason, J. (2000). Human error: Models and management. British Medical Journal, 320, 768–770.
Rouf, K., White, L. & Evans, K. (2012). A qualitative investigation into the maternal experience of having a young child with severe food allergy. Clinical Child Psychology and Psychiatry, 17(1), 49–64.
Toren, C. (2003) Ethnography: theoretical background. In (Ed) Richardson, J.T.E., Handbook of Qualitative Research Methods for Psychology and the Social Sciences. Oxford: Blackwell.
Turner PJ, G. M. (2015). Increase in anaphylaxis-related hospitalizations but no increase in fatalities: An analysis of United Kingdom national anaphylaxis data, 1992-2012. Journal of Allergy and Clinical Immunology, 135(4), 956-963.
Can interventions make a difference?
Rebecca Knibb considers efforts to reduce the psychological impact of food allergy.
Growing up with allergy
Audrey DunnGalvin considers the impact of severe food allergy on the quality of life and development of children and adolescents.
‘I haven’t said goodbye to my kids’
Béré Mahoney, Eleanor Bradley, Elaine Walklet and Steve O’Hickey on the hidden psychological challenges of living with anaphylaxis in adulthood.
Inside the asylum
We gather links from the archives of The Psychologist and Research Digest, and elsewhere.
‘A damning picture of the challenges facing psychologists’
Ella Rhodes reports on a survey of the working lives of members of the British Psychological Society.