Refusing to be ill: a longitudinal study of patients' experiences of asthma/allergy

Purpose : The purpose of this study was to search for a deeper understanding of the ways patients with asthma/allergy experience their illness situation.

Method : Thirty patients with a history of airway symptoms on allergen exposure and a positive skin prick test were included in the study. They took part in open-ended interviews in their homes twice at an interval of eight years, according to the phenomenographic approach.

Results : Fourteen different categories of experience were identified: 'knowing for oneself', 'body related', 'environment related', 'psychosomatic', 'magic', 'fatalism', 'compliance with medication', 'alternative medicine', 'health care', 'provocation', 'avoidance', 'normalization', 'normification' and 'pursuing life'. The analysis also showed that these categories, to varying degrees, were an expression of a desire to retain an ordinary healthy identity and its value. The longitudinal results showed that with time the patients distanced themselves from the medical perspective and found their own ways of thinking and acting in relation to their ill health, which is seen as strengthening for the identity.

Conclusions : The different, individual ways patients with asthma/allergy developed in relation to the illness situation have a preserving effect on the identity, which ought to be considered in patient education and rehabilitation.