Discovery and management of child allergy from the parent perspective

Abstract

The overall objective of this thesis is to extend the knowledge and deepen the understanding of care-givers management of child allergy, especially of suspected food allergy. This is done by describing and exploring how parents with children who have exclusion diets at school discover and responds to their children’s allergy-related problems.

The first study focuses on the whole group of children (n 230) with special diets at school from the viewpoint of parents’ knowledge and management of the children’s problems. It addresses questions regarding (1) whether or not the children have had contact with health care, (2) whether or not they were diagnosed with food allergy, (3) to what extent they had other allergies, (4) what characterized their food-related symptoms, (5) if these symptoms were consistent with the clinical experience of food allergy (6) and any differences in parents’ reports of the extent of children’s food-related problems in regard to whether they had sought health care or not. The results showed that the majority of parents had consulted doctors for their children’s problems, and most children had been diagnosed by a doctor. Most children also had other allergies or asthma in addition to their food-related problems. The children’s food-related problems were consistent with the clinical experience of food allergy. Parents who had sought medical aid for their children’s problems described more extensive and potentially life-threatening (e.g. anaphylactic) symptoms than did the parents who had not sought professional help. Overall, the characteristics of children’s symptoms were similar in both groups and were considerable enough to explain why they avoided certain foods and had exclusion diets at school.

The second study addresses the question of how parents discovered developing bodily symptoms when the children were young, how they interpreted and responded to the problems before they decided to seek professional medical help and how they came to the decision to seek help. Nineteen parents were interviewed about the problem-solving process consisting of two temporal phases: (1) the pre-problem phase, or the period before the child’s problems had emerged, (2) and the emerging phase where bodily problems were discovered and managed differently depending on the emerging nature of the problem that were either (2.a) acute (airway problems) or (2.b) more gradually appearing (stomach problems and eczema) in the families’ everyday lives. To understand and manage the time period before the child was born, before he/she had developed any symptoms and the phase when the symptoms emerged, parents used different self-diagnostic techniques and methods. They experimented with different temporal and situational clues that eventually led them to explain their children’s symptoms as indicating something wrong, and not as normal children’s problems, as they had first thought. Only when parents could not fully explain the child’s symptoms or make the problems disappear or improve, did they often seek medical advice or care at the child health care centre.

The wide-ranging knowledge and experience parents have of their children’s allergies are a result of their active strategies and by reinforcing themselves as active and in control they also demonstrated their moral responsibility as parents. The fact that the child’s whole lifetime and different temporal contexts are used by the parents in their decisions about seeking professional help, eating habits and exclusion diet at school is an important factor that has to be considered in clinical practice. Health care professionals have to listen to what parents have done before seeking medical help, who they are and how they want to be seen by others because this would improve the communication between parents and health professionals as well as the parents’ satisfaction with health care.