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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.