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Food Allergy and Intolerance Research

Project Code: T07045

31/05/2005

1.1 INTRODUCTION

forum qualitative was commissioned to carry out qualitative research to establish the information needs of teenagers and young people with food allergies and intolerance, and to explore how best these needs can be met and how better to communicate with children and young people.

1.2 METHOD

Stage I of the research involved group discussions and depth interviews. Fifteen depth interviews were carried out with teenagers and young people with food sensitivities. Twelve depth interviews were carried out with parents and children with food sensitivities. Five mini-groups were conducted with young people with food sensitivities, and five group discussions were conducted with parents of food sensitive teenagers.

Stage II of the research comprised of an interactive workshop, involving young people with food sensitivities, parents, representatives from the Food Standards Agency and COI, and professionals involved in the field of food sensitivity.

1.3 OUTCOME

The way individuals deal with their food sensitivity can be very variable, with many factors combining to impinge on attitudes, behaviours and needs – for example severity, age of onset/diagnosis, personality/mindset and parenting style.

Food sensitivity is felt by young people to have many ‘downsides’, including: feeling ‘different’; effect on social and inter-personal life; vulnerability to lack of sympathy/teasing/bullying; unpleasant symptoms; dietary restrictions. These difficult feelings, coupled with ‘normal’ teenage angst, can lead to resentment and denial, with increased risk of adverse reactions – counterbalanced to a greater or lesser extent by growing maturity and a desire for independence.

Parents agreed that food sensitivity adds an extra element to the ordinary challenges of life with a teenager. Parents could feel very overwhelmed at the diagnosis, and while they learned to manage the situation, they were also prone to difficult feelings such as anxiety, guilt and isolation. They too identified the problems of restrictions on diet and less spontaneity in family life, as well as financial issues – and fears for the future.

Within the parental home, a key element in managing food sensitivity is controlling what foods come into the home. Labelling of pre-packed food plays a crucial role in this (and is discussed in more detail below).

Parents were keen food label readers – and claimed to train their children to read them too. Storage of food was also important, with again labelling providing an important ‘safety net’. Family eating presents dilemmas over whether to cook one ‘safe’ (but perhaps boring) meal for all or to cater individually to food sensitive family members. The general UK trend towards cafeteria-style eating as children get older can be seen as helpful in this context, ‘normalising’ the provision of individual meals to suit different family needs. Access to foods for snacks is also an issue; again labelling is important, and it is also an area where the child’s level of responsibility is put to the test.

There were widespread criticisms of inconsistencies in food labelling relevant to food sensitivities, and a desire for clear, well-presented information using colour coding and symbols. As the child enters and moves through the education system, there are anxieties at each time of change. While most were more or less satisfied with how food sensitivity was managed at the nursery, infant and primary stages, there were significant concerns about secondary school: a ‘big move’ which demands a lot in terms of children’s responsibility for themselves. The greater freedom of secondary school, coupled with peer pressure and the need to make friends, may put particular strain on food sensitive young people’s self-management. These strains are redoubled at the time of transition to university or college, especially if this also involves a move out of the parental home. (All university/college respondents were living away from home, by sample definition.) Living independently presents many challenges, related to shopping, cooking, eating in ‘catered’ environments and self-catering in shared accommodation. Often the process of adjustment was described as ‘trial and error’, with evident risk of adverse reactions.

We hypothesise that there is a series of ‘management hot spots’ in a young person’s life: the school and living transitions already described, plus events such as starting to go out independently with friends, starting to drink alcohol, and the first independent holiday.

More frequent adverse reactions among teenagers and young people are, we believe, due to a number of factors: insufficient ‘training’ leading to faulty risk assessment; the stress of change and new situations; ‘normal’ teenage feelings (e.g. rebellion, wanting to fit in) exacerbated by difficult feelings around the food sensitivity; peer pressure; more ‘risk opportunities’; time lag between removal of the parental safety net and development of effective self-care; late onset/diagnosis. Eating away from home can be an especially problematic process. Eating out as a family is the least risky, though there are issues around restricted choice of venue and meal, doubts about the ability/willingness of staff to respond constructively, inadequate menu information, and fear of embarrassment.

These issues still apply when the food sensitive young person eats out independently but are exacerbated by the risk of teenage irresponsibility and effects of peer pressure. Holidays were also a time of challenge – especially abroad, and for young people holidaying independently. Because eating out is such an important part of our culture, food sensitive young people and their parents have to work out coping strategies.

A sample menu notice shown to respondents drew some positive responses, though it was not felt to be a substitute for accurate and detailed menu information.

There were mixed reactions to the idea of an allergy chef card, but sufficient interest to suggest that this may have potential. Support from an authoritative body like the Food Standards Agency could enhance its appeal.

As regards information sources, usage and needs, we found wide variations in respondents’ propensity to seek out information, with coeliacs the most likely to look for and to be given information about their particular food sensitivity. Where respondents had sought and/or received information, this came from a wide range of sources e.g. hospital doctors, GPs, school nurse, alternative practitioner, books, magazines, TV programmes, internet and other families. Where there had been contact with a dietician, this seemed a particularly valuable source of information and advice.

Only a minority of respondents had actively sought information, the majority being passive recipients. It was not felt to be a high-profile topic, and some respondents were unsure whether there was anything significant to be learned. For others, avoidance or denial may have been the issue. However, respondents’ accounts of their feelings at diagnosis suggested that there is an often unmet need for clear information and guidance at this time – and as the various ‘hot spots’ are reached.

There was also a widespread feeling that information and ‘consciousness raising’ about food sensitivity was needed in the wider world: health, education, catering, retailing and the general public. There had been only limited use of the internet as an information channel, but it was agreed that it had a potentially strong role to play. Discussion of a range of websites indicated that the key factors in appealing to a young audience include: explicit targeting; use of colour, illustrations and animation, good sectioning, real-life content, straightforward tone, positive exploitation of the web’s technical capabilities.

Discussions at the interactive workshop supported the concept of risk ‘hot spots’ as young people take increasing responsibility for their food shopping and food preparation, with the method of diagnosis, and the transition from primary to secondary school, again identified as especially worrying times. Among a number of suggestions, the internet was confirmed as a potentially important information source for young people with food sensitivities, albeit with criticisms around the content and presentation of such sites and about awareness. As regards food labelling, workshop participants in some instances had rather ambitious ideas around symbols and colour coding. However, there was some consensus that a universally recognised ‘Allergy’ symbol on the front of pack, and a consistent approach to the provision of clear allergen information on the back/side of pack, would go a long way towards empowering people with food sensitivities to make their own decisions about the suitability of the product for them. The third topic discussed at the workshop – eating out – was confirmed as a key area and one where appropriate information and help were not always available. Participants wanted clear written information about ingredients and allergy risks, and access to knowledgeable and responsive staff within the catering establishment. Chef cards were again felt to have some potential.

1.4 CONCLUSIONS

Although the ‘environment’ for food sensitive people is improving, there is still felt to be significant scope for positive change.

While many of the issues operate at an emotional level and are outside the direct remit of the Food Standards Agency, we believe that the Agency has an important role to play in providing some of the information-based tools which will help young people and their parents manage their food sensitivities more effectively – at the point of diagnosis, and subsequently.

Food labelling is a crucial area, and there is widespread support for any further improvements the Food Standards Agency can bring about in this area. Specifically, a standardised allergy symbol, with clear back-up information would be welcomed.

Eating out is another important area, and food sensitive young people and their families would welcome more information and more aware staff. We would also recommend further development of the ‘chef card’ idea, and exploration of the role the Food Standards Agency could play in relation to this. More guidance in the context of holidaying with a food sensitivity would also be appreciated.

Within the education system, secondary school seems especially fraught, and any encouragement and support the Food Standards Agency can give to positive, practical support would be welcomed. The transition to university or college can also set up strains and risks, and information/guidance may be appreciated at this stage.The relatively limited amount of information-seeking behaviour demonstrated by our respondents highlights the need for pro-active publicity in this area.

We recommend that the Food Standards Agency continues to develop its presence on the internet, and this research provides guidance on the appropriate content, style and tone of communications aimed at young people.

There are also other audiences for communications about food sensitivity – those who come into contact with food sensitive young people in professional or personal capacities. This suggests the need for ‘joined-up thinking’ – and action – to address the issues across the widest possible base and to bring about effective intervention at the ‘hot spot’ times which carry the greatest risk. Working with and in such partnerships would also provide a means for the Food Standards Agency to communicate with food sensitive young people, raising their awareness of the availability of information and their propensity to use it.

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