Among children in North American and European countries, allergies to foods have increased in prevalence. This increase is accompanied by significant impact on families'quality of life and psychosocial functioning. Studies of families with food allergic children have shown a variety of negative effects consequent to the strains of daily management involving avoidance of indicated foods, as well as anxiety and distress that results from constant vigilance and fear of life-threatening reactions. However, it is unknown what proportion of families with food allergic children experience disabling psychosocial consequences. Given the increasing prevalence of pediatric food allergy (FA), there is an urgent need for a better understanding of how well parents are able to execute a food allergy management plan, how much anxiety and distress they experience as they struggle to manage food allergies, and to what extent they are achieving a balance between insuring their children's safety while achieving normative developmental and family functions. Maladaptive family patterns are believed to include both under-responders and over- responders;however, no measure exists to assess and describe these patterns of adaptation. Existing measures assess food allergy related quality of life or impact of food allergies on families, but no measure takes into account the adequacy with which families integrate management demands into a smoothly functioning and balanced family life. To address this need, we propose to develop an interview-based measure of family management and adaptation to children's food allergies based on an instrument previously developed by our research group for assessing family asthma management-the Family Asthma Management System Scale (FAMSS). The behaviors required for effective management of asthma are well understood, and have many similarities to the behaviors required for the management of food allergies. The resulting food allergy adaptation measure will be used to identify patterns of family adaptation to food allergies based on adequacy of action taken for avoidance and allergic reaction preparation as well as levels of anxiety and distress regarding various aspects of the children's food allergies. The patterns of adaptation and levels of distress that are identified with the new measure will lead to the development of intervention services tailored to the needs of families with maladaptive patterns. We expect that the information derived from this R21 project will form the basis of an R01 application to design, deliver and evaluate a psychosocial intervention for families of children with food allergies.
Food allergies have increased dramatically in prevalence in the past decade. The public media has drawn attention to the severe impact on families of food allergic children due to the strains of daily management and the anxiety and distress that results from constant vigilance and fear of life-threatening reactions. Attention has also turned to the needs of food-allergic children in the public school setting, where both affected and unaffected children are impacted. The goal of this study is to develop an interview-based measure of families'food allergy management and adaptation. With this tool it will be possible to evaluate families'adaptation to their children's food allergies, to determine how many families have significant distress or difficulty managing, and to develop services for families with difficulties in coping.
|Fedele, D A; McQuaid, E L; Faino, A et al. (2016) Patterns of adaptation to children's food allergies. Allergy 71:505-13|
|Klinnert, Mary D; McQuaid, Elizabeth L; Fedele, David A et al. (2015) Children's Food Allergies: Development of the Food Allergy Management and Adaptation Scale. J Pediatr Psychol 40:572-80|