Attributes and views of families with food allergic children recruited from allergy clinics and from a consumer organisation

A significant body of food allergy research has been conducted with families recruited from consumer organizations (COs). However, there has been no systematic comparison of the characteristics of such families with those attending specialist allergy clinics (ACs), nor have parental views on food allergy COs been examined in detail. To address these questions, 44 families with food allergic children recruited from hospital clinics and 25 families recruited from a CO: (i) completed a survey with items concerning demographic details, allergy features, and sources of allergy information, and (ii) participated in qualitative interviews and focus groups concerning their experiences. Significant differences were found in reported number of food allergies and nut allergy, seeking of second opinions, adrenaline autoinjector possession (but not use) and sources of food allergy information. Parents valued COs as sources of practical information and emotional support, but viewed advice which did not acknowledge their individual circumstances and heightened anxiety from contact with other anxious parents as being unhelpful. Research conducted with CO members is valuable, but may have limited generalizability to other populations. To supplement the information and support provided by ACs, all parents should be given the opportunity to join a CO, with guidance from their clinician towards those aspects of membership which are most likely to be helpful.