Siblings of children with cancer often feel invisible not only within the family so also in health care. Guidelines for siblings of children with cancer emphasize the importance of informing and involving them from diagnosis and onward.
In order to improve the situation and develop suitable interventions for siblings of childhood cancer patients, the aim of this study was to examine siblings’ advice to health care professionals working with children with cancer and their families.
The Figure below present an overview of the advices from sibling to health care personnel. A majority of the advices were associated with the siblings needs of being included in the health care to get psychosocial support or because they wanted to be included in the brother’s or sister’s care, i.e. information needs or because they wanted to be involved more practically. Many statements were associated with a lack of communication between staff and siblings, which was closely linked to a non-established relationship. The siblings’ need of medical information and psychosocial support continued years after the brother’s or sister’s death. The siblings also meant that the physical health care environment have to be improved, e.g. with help from the affected families. Support to parents in a way to support siblings were also an advice.
Even if guidelines for siblings to children with cancer has existed for years this study showed that siblings still have unmet needs. Therefore, suitable interventions need to be developed and implemented in the following areas:
1) Psychosocial support, i.e. offer siblings participation in support groups, a counselor and/or help in daily living from diagnosis to years after the death
2) Practical involvement of siblings in the care of the brother or sister
3) Information to siblings about the brother’s/sister’s disease and care
4) Support to parents in a way to support siblings
5) The physical health care environment
The study was based on bereaved siblings’ answers from a nationwide survey in Sweden during 2009. Of 240 eligible siblings, 174 participated in the survey (73% response-rate) whereof 108 (69 women and 39 men) answered the open-ended question about what advice they would like to give to health care professionals. To better understand the siblings’ answers a focus group discussion was carried out in May 2014 as a complement to the open-ended question. Data have been analyzed with content analysis.
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