Aims: To develop a questionnaire for cancer patients' informal caregivers, measuring the caregiving tasks and consequences, and the caregivers' needs with a main focus on the interaction with the health care professionals. Such an instrument is needed to evaluate the efforts directed towards caregivers in the health care system.
Material and methods: In order to identify themes relevant for the questionnaire, existing literature was reviewed and supplemented with focus group interviews with cancer patients' caregivers, cancer patients, clinicians, and cancer counselors. For each of the identified themes, one or more items were developed. During the development process, the items were evaluated by cognitive interviews in order to reduce problems with comprehension and response.
Results: The literature review and eight focus group interviews with a total of 39 participants resulted in a list of relevant themes concerning the caregiving tasks and consequences, and the caregivers' needs. Subsequently, items were developed, covering each relevant theme, and the questionnaire draft was evaluated by cognitive interviews with 24 caregivers. All in all, eight versions of the full questionnaire were evaluated, and furthermore, two items in the final version were evaluated in eight additional interviews. The final version of the questionnaire, called the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN), contains 41 items.
Conclusion: The CaTCoN aims to measure the extent of cancer caregiving tasks and consequences, and the caregivers' needs, mainly concerning information from and communication and contact with the health care professionals. The psychometric properties of the instrument need to be evaluated before the CaTCoN is ready for use.