Patient Preference and Adherence (Sep 2024)
Living with and Caring for People with Multiple Food Allergies: A Qualitative Study
Abstract
Christina Ciaccio,1 Jessica Dunne,2 Andrea Bever,2 Karissa Johnston,2 Stacey Kowal,3 Arpamas Seetasith,3 Andrew Lloyd,4 Alexis Mickle2 1The University of Chicago, Chicago, IL, USA; 2Broadstreet Health Economics & Outcomes Research, Vancouver, British Columbia, Canada; 3Genentech, Inc., South San Francisco, CA, USA; 4Acaster Lloyd Consulting Ltd, London, UKCorrespondence: Christina Ciaccio, Department of Pediatrics and Medicine, The University of Chicago, 5841 South Maryland Avenue, Chicago, IL, 60637, USA, Tel +1-773-834-4010, Email [email protected]: The quality of life (QoL) impact of food allergies extends beyond severe allergic reactions, as food avoidance can permeate the daily lives of individuals with food allergies and their caregivers. People with multiple food allergies may experience a greater impact on QoL than people with a single food allergy, but there is limited evidence available. The aim of the study was to provide insight into the lived experiences of adults, teenagers, children, and caregivers of children with multiple food allergies.Methods: Semi-structured interviews were conducted of people with multiple food allergies and their caregivers (n = 20) in the United States, including 10 adults, 5 teenagers, and 5 caregivers of children. Patterns in responses were explored using reflexive thematic analysis.Results: Four themes were developed by the researchers to convey the experiences of people with food allergies and QoL impact: preparedness and allergen avoidance results in a loss of spontaneity; emotional impact varies by person and for each person; participating in society involves speaking up and trusting others; and food is more than nutrition. In addition, 3 themes were identified that convey the experiences of caregivers: looking out for your child’s safety is an emotional balancing act; limitations on what you can do on your own and as a family; and creating a safe and fulfilling environment can be time-consuming and costly.Conclusion: These findings highlight that people with multiple food allergies experience social limitations, stress about food safety and allergen avoidance, and restrictions on freedom. Caregiver QoL is impacted by the need to navigate social, emotional, and practical implications of caring for a child with multiple food allergies.Plain Language Summary: People with food allergies must constantly make an effort to avoid the foods they are allergic to. Having an allergy to more than 1 type of food (for example, peanuts, eggs, or milk) can be even more difficult. In this study, we interviewed adults and teenagers with food allergies, as well as parents of children with food allergies, about how having an allergy to more than 1 type of food affects their daily lives. We found that people with more than 1 food allergy often had stress and anxiety. They also had to change the way they traveled or socialized. Parents caring for a child with food allergies were also impacted. Parents had to look out for their child’s safety and made changes to family plans and activities. The lives of people with food allergies and their families may be improved by treatments or interventions that can lower the risk of allergic reactions.Keywords: food hypersensitivity, quality of life, patients, caregivers, multiple food allergies
