The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach.

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well-being [36-item short-form health survey (SF-36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision-making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer-specific information may alleviate difficulties and improve health and well-being. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.