Developing a care giver quality-of-life instrument. Preliminary steps

Measures have been developed to evaluate care giver burden in care givers of geriatric patients and patients with Alzheimer's disease. The profile of the care giver of the patient with cancer is different, and no tool measuring quality of life for this group exists. This study represents the first phase in the development of such an instrument.

Semistructured interviews were conducted with 22 matched patients and family care givers and 10 healthcare professionals to elicit an item pool of care giver concerns. A subset of patients and care givers completed quality-of-life and mood measures from the care giver's perspective.

Pearson product-moment correlations, analysis of variance, and Student's t-tests were performed to detect interactions of demographic variables with the mood and quality-of-life measures. Patients significantly underestimated the emotional distress experienced by their care givers. These results may be related to protective coping strategies used by the patients.

This preliminary study underscores the need to address the emotional distress experienced by care givers. The items generated from this study will be reduced based on importance rankings by another group of care givers, and the remaining items will undergo validity and reliability testing.