How chronic disease affects children's views on being ill and healthy: a comparative study

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The recognition of the importance of a child‐centred approach in patient education and care has demonstrated the need to understand children's views and perceptions, in order to ensure that their health needs can be effectively met 1. Self‐management is often required for chronic diseases, and paediatric healthcare providers must understand and incorporate the child's views of health and illness 2 to allow them to negotiate management plans and achieve better health outcomes 3.
In this domain, some studies tried to understand the influence of the experience of disease on children's views of health and illness, and most of them focused on the child's experiences while living with a disease, such as asthma 3, eczema 5 or diabetes 6. The studies’ findings are not consistent, although some of them show that the experience of having a disease affects the way children understand and define what is like to be ill 4 and healthy 8. Children who have experienced long‐term diseases might be expected to think differently from healthy children due to their greater exposure to poor health 9. As noted by Crisp et al. 10, the nature of a disease and its treatments can be expected to influence the need for children to reflect and consequently comprehend being ill.
The approach to research on illness suggested by Leventhal et al. 11 is a model that has been used to study the perceptions of health and illness in adults and in children and adolescents 4 with a specific focus on the nature and dimensions of these perceptions. A similar approach is followed in the model proposed by Burochovitch and Mednick 14, which suggests a framework with categories conceptually identical to three of the previous model's dimensions (causes, identity and consequences), but it adds a category related to feelings, enhancing the model's comprehensiveness. According to this model, which was developed by interviewing children aged 6–14 years, health and illness are distinct though related concepts, as both concepts/representations share the same structure and dimensions, although children use these dimensions (themes) differently in the two definitions. Illness is conceptualised mainly based on the presence of symptoms and feeling states, and being healthy is characterised primarily in terms of feelings and engagement in health preventive and maintenance practices. The last dimension is seldom used by adults 14, which shows the model's appropriateness for capturing children's perspectives. Moreover, previous studies have shown that the model's framework categorises, in a valid and exhaustive manner, the conceptions of health and disease of children of different age groups 15.
With the purpose of studying to what extent and in what ways the experience of illness influences the conceptualisations of children on what it means to be healthy and be ill, this study has selected three chronic diseases – namely cancer, asthma and diabetes – given that these diseases and their treatments involve different and specific experiences.
The most frequent oncological diseases in children are leukaemias, central nervous system tumours and lymphomas. In general, aggressive treatments are required and have significant side effects, such as nausea, vomiting, alopecia and fatigue, among others. Children with these diseases sometimes require long‐term hospitalisations and isolation periods, placing major restrictions on normal childhood activities. Limitations on children's normal functioning persist even after remission, since anorexia, fatigue and anxiety are some of the long‐term side effects of treatments 16.
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