Elissa M Abrams1, Elinor Simons2, Leslie Roos3, Kim Hurst4, Jennifer L P Protudjer5. 1. Department of Pediatrics, Section of Allergy and Clinical Immunology, University of Manitoba, Winnipeg, Canada; Children's Hospital Research Institute of Manitoba, Winnipeg, Canada; Meadowood Medical Centre, Winnipeg, Canada; Department of Pediatrics, Section of Allergy and Clinical Immunology, University of British Columbia, Vancouver, Canada. 2. Department of Pediatrics, Section of Allergy and Clinical Immunology, University of Manitoba, Winnipeg, Canada; Children's Hospital Research Institute of Manitoba, Winnipeg, Canada. 3. Deparment of Psychology, Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Canada. 4. Faculty of Arts and Sciences (Life Sciences), Queen's University, Kingston, Canada. 5. Department of Pediatrics, Section of Allergy and Clinical Immunology, University of Manitoba, Winnipeg, Canada; Children's Hospital Research Institute of Manitoba, Winnipeg, Canada; George and Fay Yee Centre for Healthcare Innovation, Winnipeg, Canada; Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden; Department of Food and Human Nutritional Sciences, University of Manitoba, Winnipeg, Canada. Electronic address: Jennifer.Protudjer@umanitoba.ca.
Abstract
BACKGROUND: Approximately 8% of children have food allergy. Yet, little is known about how parents cope with the burden of this disease. OBJECTIVE: This study aimed to describe the perceptions of food allergy-related mental health issues of parents of children with food allergy. METHODS: Parents of children with pediatric allergist-diagnosed food allergy were recruited through allergy clinics and education centers in a large Canadian city. We used content analysis to identify overarching themes. RESULTS: We interviewed 21 parents with children (boys [13/21; 62.9%]) aged younger than 12 months to 16 years. Interviews averaged 47 (range 33-82) minutes. Most children were diagnosed as infants, and few (7/21; 33.3%) were monoallergic. About one-half (7/16; 43.8%) had a history of anaphylaxis. Parents of children with a single food allergy spoke of "accommodation and adaptation." In contrast, parents of children with multiple food allergies described "anxiety and isolation" and spoke of being "depressed" and "terrified" about leaving their children in the care of others who may not be equipped to handle food allergy. Many parents felt "overwhelmed and alone," especially if they lacked support from extended family and/or their social circle. "Fear for today, fear for the future" was commonly described by parents, although a tenuous symbiotic coexistence was developed, with parents stating "Food allergy management has become our normal." Finally, a small group of parents reported that "Bullying happens, but we are alone to cope with it." CONCLUSION: Multiple food allergies negatively affect the mental health of parents, in a variety of well-being domains.
BACKGROUND: Approximately 8% of children have food allergy. Yet, little is known about how parents cope with the burden of this disease. OBJECTIVE: This study aimed to describe the perceptions of food allergy-related mental health issues of parents of children with food allergy. METHODS: Parents of children with pediatric allergist-diagnosed food allergy were recruited through allergy clinics and education centers in a large Canadian city. We used content analysis to identify overarching themes. RESULTS: We interviewed 21 parents with children (boys [13/21; 62.9%]) aged younger than 12 months to 16 years. Interviews averaged 47 (range 33-82) minutes. Most children were diagnosed as infants, and few (7/21; 33.3%) were monoallergic. About one-half (7/16; 43.8%) had a history of anaphylaxis. Parents of children with a single food allergy spoke of "accommodation and adaptation." In contrast, parents of children with multiple food allergies described "anxiety and isolation" and spoke of being "depressed" and "terrified" about leaving their children in the care of others who may not be equipped to handle food allergy. Many parents felt "overwhelmed and alone," especially if they lacked support from extended family and/or their social circle. "Fear for today, fear for the future" was commonly described by parents, although a tenuous symbiotic coexistence was developed, with parents stating "Food allergy management has become our normal." Finally, a small group of parents reported that "Bullying happens, but we are alone to cope with it." CONCLUSION: Multiple food allergies negatively affect the mental health of parents, in a variety of well-being domains.