Objective: Several studies have concluded that family
members in palliative home care want information about the
patient's disease. The aim of this study was to describe family
members' perceptions of their motivation for receiving information
about the patient's disease.
Method: Semistructured tape-recorded interviews were
performed with 20 family members of patients with incurable progressive
cancer who were admitted to hospital-based home care in Sweden. Data
were analyzed using a qualitative phenomenographic method.
Results: Family members justified their informational needs
by emphasizing that they needed to understand and confirm what would
happen when the disease progressed, to be mentally prepared for the
future, to organize their daily life, to be a source of information to
others, and that receiving information was a natural right.
Significance of results: This study has revealed some
explanations as to why family members want information. In clinical
practice, it is important that palliative care team members are aware
of family members' level of knowledge and their need for
information, as this mental preparation is important.