Abstract
Despite clinical experience that suggests a high burden of care among relatives of individuals with a primary malignant brain tumor (PMBT), little is known about their actual needs. In this study, the caregivers' personal experiences, quality of life, burden of care, and psychological well-being were examined. Fifty-nine percent did not receive any financial aid for home care, 33% had increased risk for psychosomatic problems, 45% had anxiety, and 33% increased depression levels. The caregiver's quality of life was most strongly affected by the burden of care (p < .001) and the patient's mental state (p < .03). To improve the situation, empathetic professionals and an early implementation of palliative care and social work are required.
Acknowledgments
We thank all patients and families who participated in the study and generously shared their experiences with us.
Notes
Note. MMS ++++ = not measureable; +++ = advanced dementia; ++ = increased dementia; + = normal level.
HADS: +++ = high level of anxiousness, depressed; ++ = increased anxiousness/depression; + = no signs of anxiousness/depression.
BSFC: +++ = at very high risk; ++ = increased risk; + = not at risk.