Three hundred Swedish children and adolescents are diagnosed with cancer every year.
‘The illness always brings anxiety and grief to the family. Everybody seems to focus on the ill child, and my thesis is the first large study on how the siblings experience and manage the situation’, says Margaretha Nolbris, nurse, who interviewed 35 siblings of children who were being treated/had been treated for or had died of cancer. The interviewed siblings were 8-36 years old.
The siblings reported feeling grief for many reasons, for example because their brother or sister had suffered so much pain or because they wondered why their brother or sister had to become ill. They also felt sad that the ill sibling had lost so much time from his or her childhood or adolescent years.
‘But they felt like they had nobody to share these thoughts with. In situations where the thoughts of an ill brother or sister get too difficult, they try to either think positively or not think at all’, says Nolbris.
The study also found that the unspoken threat of the illness may strengthen the bond between the siblings, and neither parents nor friends are included in this relationship.
The thesis shows that the siblings experience anticipatory grief related to the risk of losing a close person as soon as the diagnosis has been made. This grief persists throughout the entire course of treatments and follow-up checks.
‘Parents and medical personnel should remember to involve siblings as soon as a diagnosis has been made, and then keep them informed and updated about the illness, treatments and the ill child’s status. To help siblings work through their thoughts and experiences, they should be offered counselling, both one-on-one and in a group with other people who are in the same situation’, says Nolbris.
The siblings whose brother or sister had died of cancer saw the event as very unnatural and said they were not prepared, even if the brother or sister had been very ill. Life often turned into chaos and siblings often had difficulties understanding their own reactions. The grief process could not be controlled and it was sometimes necessary to take a break from grieving by doing something else, such as do a hobby or go to school, work or a party.
Doctoral thesis for the degree of Doctor of Philosophy at the Sahlgrenska Academy at University of Gothenburg, Institute of Health and Care Sciences.
Title of the thesis: Being a sibling of a child or young person with a cancer – Thoughts, needs, problems and support.