Qualitative research: interview findings

Online interviews were completed with 22 people living with FHS (or their carers) to inform the development of the survey questions. Interviews allowed the study team to discuss consumption habits and adjustments made due to FHS in detail and resulted in the identification of common areas of the financial burden for people living with FHS. The interviews were then analysed, and the findings are grouped thematically in the subsections below (the topic guide is available in Appendix 3). 

4.1 Main findings from the online interviews

4.1.1 Preparing food

Ownership of personal utensils and other separate kitchen equipment were mentioned by interviewees as essential for preparing food and avoiding cross-contamination, and that these needed to be replaced regularly. One interviewee said they carry their own set of cutlery when eating outside the home. Another said they spend considerable time on cooking everything from scratch because processed food products contain more ingredients and are riskier. Another interviewee said they must cook separately from their family, buy substitutes, and spend time adjusting recipes to ensure meals are safe to eat. 

4.1.2 Reading food labels

People living with FHS (or their carers) were asked about their normal shopping habits and the time spent on grocery shopping. These questions prompted interviewees to describe their shopping routine and a few mentioned reading food labels as a particularly time-consuming activity that increases the time spent on food shopping. One person said they can spend up to two hours at a grocery shop just checking labels. Another said it takes up to three hours to do a grocery shop because half of that time is spent reading labels. 

Two interviewees said they must visit multiple stores to buy their preferred allergen-free products. Another said they prefer to shop at one supermarket chain but visit another chain to purchase bread (this person avoids another large supermarket chain due to perceived poor labelling). One interviewee said they shop online because it takes less time, while another interviewee avoids online shopping because food labels can be inaccurate/ incomplete. Food purchased online is at higher risk of being wasted than food purchased in store as its safety can only be checked on delivery. 

Three interviewees said they were concerned about labelling legislation and ‘that it does not go far enough’. They highlighted the limitations of the 14 main allergens for mandatory labelling. Labels for allergens outside this list (eg chickpeas, pea) can be poor and dog food (transferred by touch) can cause allergic reactions as these products do not have to comply with mandatory allergen labelling. One interviewee expressed concern about the impact of the UK exiting the EU on allergen labelling and food safety. 

A reoccurring theme was the constant change in product ingredients. People living with FHS cannot repeat buy ‘safe’ processed products without checking the labels first. One interviewee provided an example of a leading brand of sunflower spread that was previously safe but changed the formula to include their child’s allergen.

4.1.3 Takeaway

Two interviewees said they do not order takeaways because they do not trust food business operator staff to manage allergen exposure. Another interviewee avoided takeaways after needing to attend A&E, following food contamination with an allergen. 

4.1.4 Holidays

Most interviewees reported that holidays were a major source of concern and stress, especially those with children with FHS. This topic was raised unprompted by most interviewees. They emphasised the additional financial cost and lost time, as well as the anxiety involved. 

Flying is a concern for individuals who are at risk of a severe reaction. One interviewee said they do not fly, because they cannot risk a fellow passenger opening a bag of nuts. Another interviewee said the risk of anaphylaxis co-factors when flying is too high and so they avoid it. One interviewee explained the difficulties in getting airlines to make allergen warning announcements on board. The burden falls on the person living with FHS to repeatedly ask for the announcement and negotiate with the cabin crew.

Three interviewees prefer self-catering holidays so they have more control of food preparation, but this can be more expensive than holiday packages with fully inclusive food options while another participant said they avoid hotel buffets. Some opt for large hotel chains because they perceived them to be safer and more accountable. One person said they take food from home and do not eat out on holiday. 

A few interviewees said they spend a lot of time researching the destination to assess food safety before travel. Interviewees said they research allergen policies and hotel protocols, local hospital provision, and suitable catering options. Two interviewees said they have decided not to travel after completing research due to uncertainty and risks. Language barriers were also a concern for those travelling with FHS. One interviewee shared their experience of explaining their allergies to the hotel staff and being served food containing allergens anyway.

4.2 Implications for the study from the interviews

Table 4.1: Implications from the qualitative findings (interviews) for people living with FHS

In addition to the inclusions set out in Table 4.1 above, other considerations emerged from the qualitative research which were captured by the survey: 

• household size: the decision was made to ask about household size for household shopping costs in the survey to enable more accurate cost analysis
• highest level of education: a question was added on the highest level of education as a socioeconomic indicator to enable more accurate cost analysis.