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Bereaved siblings’ advice to health care professionals working with children with cancer and their families

Introduction

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.

aim

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.

Preliminary results

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.

Conclusions

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

Senast uppdaterad: 2016-12-06.

Forskningsenhet/inriktning: Palliativt forskningscentrum
Projektstatus: Avslutat

Läs mer om forskningsenheten

www.palliativtforskningscentrum.se

Medarbetare i projektet

A. Ellegård
Dr. Tove Bylund Grenklolänk till annan webbplats, öppnas i nytt fönster
L. Jalmsell
Prof. Ulrika Kreicbergs
Dr. Malin Lövgrenlänk till annan webbplats, öppnas i nytt fönster

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