Patients with intellectual disability were included considering pre-existing developmental and cognitive tests and if attending physicians assessed their developmental age to be at least 6 years. Patients who were not able to understand and answer the questions were also not included in the study. Patients whose siblings were not aware of the condition according to the patient's estimation because they were too young or mentally retarded were not included in the study. The patients had to have at least one sibling, and the sibling had to be aware of the participant's condition. From September 2020 to February 2021, we invited the patients to participate in the study during an appointment in the outpatient clinic or a hospital stay. 2 METHODS 2.1 Patients and settingįollowing the approval of the responsible ethics committee, we performed semi-structured interviews with children and adolescents aged 6–18 years with a diagnosis of epilepsy or bronchial asthma. In addition to the interview, the affected children were asked to draw a picture “Epilepsy/Asthma, my siblings and me” in order to get a deeper insight into their perceptions of the topic. They were asked about their view on their siblings' situation and on the sibling relationship. Thus, we performed interviews with paediatric patients with epilepsy or asthma, both frequent chronic conditions in children and adolescents. 8- 14 The view of children affected by a chronic condition on the situation and on the potential burden of their siblings and the sibling relationship has been largely unexplored so far. 9Įarlier studies on the influence of a child's chronic condition on the situation of their healthy siblings addressed the healthy siblings themselves or their parents. 8 A study from Turkey showed that most healthy siblings of children with chronic conditions are physically and psychosocially affected and that there is low parental awareness about this. The Ontario Child Health Study found a two-fold risk of emotional disorders in siblings of chronically ill children. 7 The health problems of the affected children and the way parents deal with it can have an enormous influence on the situation of the healthy siblings. 6 The chronic condition influences the psychosocial wellbeing not only of the affected patients but also of their parents and siblings. 5 Parents of chronically ill children describe constraints in their daily lives. 1 They are worried about the future, 2 experience stigmatisation 3, 4 and feel disadvantaged in comparison with healthy children. However, most of them thought the condition has only a minor influence on their siblings' lives and on the sibling relationship.Ĭhildren and adolescents with chronic conditions such as epilepsy or asthma have to face many challenges.Many of the interviewed paediatric patients with epilepsy or asthma assumed that their siblings were worried about the participant's chronic condition.We interviewed 58 children with epilepsy and 40 children with asthma aged 6–18 years about how they assess the situation and relationship with their healthy siblings. ConclusionĪccording to the affected children, the condition worries their siblings but does not affect the siblings' lives or the sibling relationship. Of the participants with epilepsy, 86% and of those with asthma, 93% drew a picture 30% with epilepsy and 14% with asthma visualised an interaction with their siblings in context of a seizure or episode of dyspnoea. Of the patients with epilepsy, 91% and of those with asthma, 93% thought that the sibling relationship would not be different without the condition. Of the children with epilepsy, 83% and of those with asthma, 95% assumed that their siblings were not disadvantaged because of the participant's condition. Among other aspects, they addressed helplessness during a seizure. Of the 58 children with epilepsy, 67%, and of the 40 children with asthma, 60% thought that their siblings were worried about the condition. We performed a semi-structured interview with epilepsy or asthma patients aged 6–18 years and asked them to draw a picture: “Epilepsy/Asthma, my siblings and me.” Results We investigated the opinion of the affected child about the situation of their healthy sibling and the sibling relationship. Chronic conditions can influence the situation of healthy siblings of affected children.
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