Journal des soins infirmiers et des soins

Development of a Self-Report Workbook for Identifying Cancer Patients Knowledge Expectations

Abstract

Vaartio-Rajalin Heli*, Leino-Kilpi Helena and Puukka Pauli

Patient-centeredness in patient education presupposes collaboration with the patient in the assessment of his/her knowledge expectations. In practice, there is no systematic approach to this assessment. Purpose: To describe the development process of a self-report workbook intended to assist adult cancer patients to identify and communicate their knowledge expectations during the illness trajectory. Design and methods: The workbook structure and content design was based on focus group interviews of cancer patients (n=37), in-depth individual interviews (n=16) and survey data in two countries (n=332+483). The initial version of the workbook was validated in a sample of cancer patients (n=91). Findings: The usability of the workbook was found good: patients found it relevant, logical and easy to fill in. The content validity of the workbook was shown to be good: all ten subscales were rated as rather or very clear on scale 1-4. Content validity index for subscales (S-CVI) varied from 0.40 to 1.00 and content validity index on item level (ICVI) from 0.76 to 0.94. Internal consistency was established as good: Cronbach’s alphas varied from 0.58 to 0.96. Conclusion: From the patients’ perspective, the self-report workbook is a promising aid for identifying individual patients’ perspectives to patient education and its outcomes during the illness trajectory.