Eliciting views of patients with head and neck cancer and carers on professionally derived standards for care.

OBJECTIVES: To examine views of patients and carers on the process of care for people with head and neck cancer; to assess whether focus groups are useful in this setting; to compare priorities and standards identified with those published by healthcare professionals; and to incorporate the expressed views into existing national standards.
DESIGN: Multicentre study of nine regional focus groups.
SETTING: Area covered by two regional health authorities. PARTICIPANTS: 40 patients who had had head and neck cancer and 18 carers. MAIN OUTCOME MEASURES: Views of individuals and groups on standards. Applicability of the method for patients whose appearance and ability to communicate was altered and for recently bereaved carers. Ease of incorporation of views into national and regional standards.
RESULTS: Patients and carers participated in discussions on all the principal questions. Opinions were expressed on waiting times, information available to patients, coordination of care, and crisis management. Professionally derived standards were substantially improved by the incorporation of the views of patients and carers. There were no technical problems in carrying out this study on patients with communication difficulties or altered appearance nor with recently bereaved carers. Occasionally, participants said that the meetings were therapeutic.
CONCLUSIONS: Professionally facilitated and analysed focus groups are effective in assessing views of patients with cancer and carers on professionally derived standards for care and can be applied in settings traditionally viewed as difficult. Views expressed by patients and carers are powerful motivators for change in the delivery of cancer care.