A diagnosis of a serious illness in a child requires time for parents to assimilate, but, in addition, visits to the doctor, admissions to the hospital and care at home take up all their dedication. It is not strange that they focus their energies on the little sick person, paying attention to the brothers. A frequent behavior but with consequences in the emotions of the latter. The study Psychosocial functioning in siblings of children with rare disorders compared with controls (in its Spanish translation), published in December 2021 by the US National Institutes of Health, examined the mental health of siblings of children with chronic illnesses. The investigation concluded that they showed more psychosocial problems and may need interventions focused on their mental health, as well as on communication and relationship with parents.
“They are at greater risk of presenting depressive and anxious symptoms and suffering from post-traumatic stress disorder. But not more risk of suffering from these disorders, but the symptoms”, clarifies Daniel Toro-Pérez, psychologist of the Palliative Care Service and Complex Chronic Patient of the Sant Joan de Déu Hospital, in Barcelona. Toro mentions that the most frequent symptoms in these children are irritability and anger in children under 10 years of age and sadness and social isolation from 11 or 12 years of age.
According to Ingeborg Porcar Becker, PhD in psychology and director of the Trauma, Crisis and Conflict Unit at the Autonomous University of Barcelona (UTCCB), the most common mistakes parents make are three: not reporting what is happening with the idea of not distressing the healthy brother, and the result is that he feels left out; remove him from the process and focus only on the sick child; or the opposite, make him hyper-responsible using phrases like “you have to help a lot because your brother is sick” or “behave very well now and collaborate”. “In all cases, harm is caused, but in the last case, guilt can also be generated in the child, since if something happens to the brother, he will think that he has not behaved well enough. It must be taken into account that before the age of 10 or 11 the reasoning is not exactly like that of the adult”, underlines the expert.
It is also understandable that parents do not know how to act at this critical moment, when all attention is focused on addressing a serious health problem in one of their children. Elisabet Peres Font is the mother of Ivet, a seven-year-old girl who, at the age of two, was diagnosed with multiple sulfatase deficiency (MSD), a rare disease that mainly affects the nervous system and produces great dependency. “Ivet has five brothers of different ages, from 14 to 29 years old, and from the beginning we informed them of everything we knew, including the youngest, who was nine years old at the time,” she explains. Peres also admits, with the experience of five years behind her, that they may have overprotected the little girl by assuming all the tasks of her care. “I would like her brothers to be able to do something for her, for example give her water or food, even though we are present. This would be ideal for them to feel useful in her care and to get involved, ”she admits. “It is good to involve them in the family activity: for example, feeding a sick brother under the supervision of the parents is fine,” adds Toro. Although this psychologist also warns against making the mistake of substituting for the father or the mother in the care of the child: “For example, that there be parentalized roles and the brother is asked to be like a second parent.”
The experts consulted agree that the first thing parents should do is explain their brother’s illness to the rest of their children. “If they are properly informed, according to their age so that they understand it, and they are given the opportunity to ask questions, their ability to understand, accompany and prepare for an adverse outcome is much greater. You have to put yourself in the child’s place, give a short and appropriate explanation and allow them to ask questions”, says Porcar. The second recommendation is not to separate them from the process, and this includes going to the hospital. “Visit your brother, see his room, find out what is happening, see your parents… All this is recommended, but it must be done in a controlled manner and explaining to him what he is going to see before going,” advises Toro. “One of the things that we have seen that healthy siblings value most is that parents organize activities with everyone, like going for a walk and having ice cream.”
The reason, continues Toro, is that they need more attention from their parents because they feel less cared for and less important than their sick sibling: “This leads to a feeling of guilt in them when they start to get older, with 9 or 10 years because they know that their brother is sick. Another valuable factor to take into account is that teachers are informed: “They must know what is happening with the sick child and the changes that may arise in the siblings.”
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