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Table 1 Specification of the ten scales hypothesized to define cancer caregiver health literacy, reasons for exclusion of content areas, and example items for each scale
| Content area identified in conceptual model | Draft scale included in pre-testing/Reason for exclusion | Example item | Health literacy dimension* | Number of items included in each scale | Response options | ||
|---|---|---|---|---|---|---|---|
| Expert review | Cognitive interviews | Psychometric assessment | |||||
| 1. Proactivity and determination to seek information | 1. Proactivity and determination to seek information | I keep looking until I get all the information that I need | Information seeking | 9 | 9 | 8 | Agree/disagree |
| 2. Information presented in quality formats | Subsumed into “Adequate information about cancer and cancer management” to minimize questionnaire length | - | - | - | - | - | |
| 3. Understanding the healthcare system | 2. Understanding the healthcare system | I understand what healthcare services the person I care for is entitled to | Comprehension | 7 | 9 | 9 | Agree/disagree |
| 4. Understanding the disease, treatment, and potential outcomes | 3. Adequate information about cancer and cancer management | I have all the information I need to help look after the health of the person I care for | Comprehension | 8 | 8 | 8 | Agree/disagree |
| 5. Information for day-to-day care | Subsumed into “Adequate information about cancer and cancer management” to ensure relevance of items to all caregivers | - | - | - | - | - | |
| 6. Processing health information | 4. Processing health information | [Please indicate how easy or difficult the following tasks are for you to do now:] Compare information about cancer from different sources | Critical thinking/evaluation | 8 | 9 | 9 | Difficulty |
| 7. Active engagement with healthcare providers | 5. Active engagement with healthcare providers | [Please indicate how easy or difficult the following tasks are for you to do now:] Ask a healthcare provider to explain things to me | Interaction | 7 | 8 | 8 | Difficulty |
| 8. Supported by healthcare providers to understand information | 6. Supported by healthcare providers to understand information | At least one healthcare provider has helped me understand information about cancer | Support networks** | 8 | 10 | 10 | Agree/disagree |
| 9. Communication with the care recipient | 7. Communication with the care recipient | I have honest talks with the person I care for about how the cancer may impact on the future | Interaction | 8 | 8 | 8 | Agree/disagree |
| 10. Understanding the care recipient | 8. Understanding the care recipient | I know how much help to give the person I care for | Comprehension | 9 | 9 | 9 | Agree/disagree |
| 11. Financial and legal support | Considered a broader contextual factor related to availability of support from Government services | - | - | - | - | ||
| 12. Practical support | Considered a broader contextual factor related to availability of support from community services | - | - | - | - | ||
| 13. Psychosocial support | Subsumed into “Understanding the healthcare system” to ensure relevance of items to all caregivers | - | - | - | - | ||
| 14. Social support | 9. Social support | I have at least one person who understands and supports me | Support networks** | 9 | 7 | 7 | Agree/disagree |
| 15. Self-care | 10. Self-care | I regularly take time away from caring | Responsibility | 11 | 12 | 12 | Agree/disagree |
| 16. Role recognition and understanding caregiver rights | Statements within the sub-theme although conceptually related were considered unable to be additively combined, thus were excluded from the scale | - | - | - | - | ||
| 17. Attitudes, approaches, and emotional challenges | Statements within the sub-theme although conceptually related were considered unable to be additively combined, thus were excluded from the scale | - | - | - | - | ||
| Total items in scale | 84 | 89 | 88 | ||||
