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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

From: Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing

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  
  1. *Adapted from health literacy dimensions identified by Sorensen et al. [11].
  2. **Additional dimension included by authors, not identified in taxonomy.