Background
Methods
Content area specification
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 |
Generation of items and response scale
# | Criteria to assess item quality | Possible outcome | Acceptable outcome to retain item |
---|---|---|---|
1 | How difficult is the item for respondents endorse the maximum score | Very difficult; Moderately difficult; Easy | All three possible outcomes. Author sought to develop constructs that contained items with a range of difficulty |
2 | How comprehensible is the item for caregivers with high and low literacy | Comprehensible; Contains words that may be difficult for caregivers to understand | Comprehensible |
3 | How relevant is the item for respondents of different ages | Relevant to caregivers ages 18 years and above; Not relevant to specific age groups (e.g., elderly) | Relevant to caregivers ages 18 years and above |
4 | How pertinent is the item to the associated content area | Critical/Core; Important; Relevant | Critical/Core; Important |
5 | How relevant is the item to all members of the target population (i.e., caregivers of adults with cancer) | Relevant to caregivers across the cancer spectrum; Specific to caregiving experiences along cancer spectrum | Relevant to caregivers across cancer spectrum |
6 | How independent is the item to other items | Moderately independent; Too closely related to one or more items | Moderately independent |
7 | How well does the item fit with other items in the construct | Fits well; Different content or meaning to other items in construct | Fits well |
8 | Does the item capture a single idea (or two closely related ideas) | Yes; No | Yes |
9 | How minimal are the information processing demands | One or two processing demands; More than one or two processing demands | One or two processing demands |
10 | Does the item stem correspond to the response scale | Yes; No | Yes |
Expert review
Cognitive interviews
Demographic characteristics | Caregivers ( n = 16) | |
---|---|---|
n
| % | |
Gender – Female | 15 | 94% |
Age (years) | ||
≤ 65 | 11 | 69% |
≥ 66 | 5 | 31% |
Care recipient cancer type | ||
Hematological | 12 | 75% |
Solid | 4 | 25% |
Length of time as a caregiver | ||
1 to 2 years | 3 | 19% |
2 to 4 years | 6 | 37.5% |
More than 5 years | 6 | 37.5% |
Unspecified | 1 | 6% |
Education | ||
Completed some or all high school | 7 | 44% |
Completed some or all of University | 9 | 56% |
Speaks English at home | 16 | 100% |
Caregiver relationship to care recipient | ||
Spouse | 9 | 56% |
Parent, sibling, or child | 5 | 31% |
Friend | 2 | 13% |
Results
Selection of content areas
Item generation and response options
Expert review
# | Construct | Relevance | Clarity | ||
---|---|---|---|---|---|
CVI range | Items with CVI <0.78 | CVI range | Items with CVI <0.78 | ||
1 | Proactivity and determination to seek information | 0.86 – 1.00 | - | 0.86 – 1.00 | - |
2 | Understanding the healthcare system | 1.00 | - | 0.86 – 1.00 | - |
3 | Adequate information about cancer and cancer management | 1.00 | - | 0.71 – 1.00 | #42 |
4 | Processing health information | 0.71 – 1.00 | #70 | 0.43 – 1.00 | #70 |
5 | Supported by healthcare providers to understand information | 0.86 – 1.00 | - | 0.86 – 1.00 | - |
6 | Active engagement with healthcare providers | 1.00 | - | 0.86 – 1.00 | - |
7 | Communication with the care recipient | 0.86 – 1.00 | - | 0.71 – 1.00 | #21, #37 |
8 | Understanding the care recipient | 0.86 – 1.00 | - | 0.71 – 1.00 | #6 |
9 | Social support | 1.00 | - | 1.00 | - |
10 | Self-care | 0.86 – 1.00 | - | 0.86 – 1.00 | - |
Construct | Item # | Initial item | Relevance | Clarity | Comments from experts | Action | Revised item |
---|---|---|---|---|---|---|---|
CVI | CVI | ||||||
Understanding the healthcare system | 81 | I know which healthcare providers look after the health of the person I care for | 1.00 | 1.00 | Almost identical to another item in the scale | Deleted | - |
Adequate information about cancer and cancer management | 42 | I am sure I have all the information I need to help manage the health of the person I care for | 1.00 | 0.71 | Item #42 and #64 are similar | Revised | I have enough information to look after the health of the person I care for |
Processing health information | 70 | Find out if the health information that I have received is suitable for the person I am caring for | 0.71 | 0.43 | Implies that health information e.g. by healthcare providers is not suitable | Revised | Find out if the health information that I have found from various resources, is suitable for the person I am caring for |
Communication with the care recipient | 21 | The person I care for tells me how they are, in order for me to help | 1.00 | 0.71 | Items #21 and 29 are similar, but also very general in description | Revised | The person I care for tells me about their health, in order for me to help |
37 | I talk honestly about the cancer with the person that I care for | 1.00 | 0.71 | Item seems general | Revised | I have honest talks about the cancer with the person I care for | |
Understanding the care recipient | 6 | I understand how much information about the cancer, the person I am caring for needs to know | 0.86 | 0.71 | There is a difference between ‘needs’ and ‘wants’ | Revised | I understand how much information about the cancer, the person I am caring for wants to know |
Construct | Item # | Initial item | Revised item | Comments from experts |
---|---|---|---|---|
Supported by healthcare providers to understand information | 50 | Healthcare providers have helped us compare information about treatments | Healthcare providers have helped me compare information about treatments | Consider using ‘me’ rather than ‘us’ to avoid confusion |
57 | Healthcare providers have helped me understand the potential side effects of treatments | Healthcare providers have helped us understand the potential side effects of treatments | Consider using ‘me’ rather than ‘us’ to avoid confusion | |
Communication with the care recipient | 58 | After appointments, I discuss the information given by doctors with the person I care for | After appointments, I discuss the information given by healthcare providers with the person I care for | Referring to doctors or all healthcare providers |
Understanding the care recipient | 14 | I understand when to let the person I am caring for do things by themselves in their own time | I understand when to let the person I am caring for do things for themselves in their own time | Perhaps “for themselves” better captures the concept |
30 | I know which everyday activities the person I care for would like to be involved in | I know which everyday activities the person I care for would like to do | Changing “involved in” might improve clarity | |
I know which everyday activities the person I care for can participate in | I know which everyday activities the person I care for can do | Changing “participate in’ to “can do” might improve clarity | ||
Social support | 4 | There is at least one person who understands and supports me | I have at least one person who understands and supports me | Consider changing the stem to follow other items |
12 | I have strong support from at least one family member | I have strong support from at least one family member or friend | Is it necessary to differentiate between family member and friend | |
66 | I have strong support from at least one friend |
Not applicable: Subsumed into above item
| As above | |
20 | I get plenty of chances to talk to other people who are caring for someone with cancer | I get enough chances to talk to other people who are caring for someone with cancer | Might not need ‘plenty’ | |
44 | I have family or friends who can attend medical appointments with us | I have at least one family member or friend who can attend medical appointments with us | Identifying one person would be adequate |
Construct | Comments from experts | New item |
---|---|---|
Understanding the healthcare system | (General comment) It is important for caregivers to understand what services and supports are available for the caregiver and care recipient | I know what healthcare services are available to help the person I care for |
Adequate information about cancer and cancer management | Suggest including additional items about managing side effects, and caregivers’ having enough information to support the care recipient | I know which side-effects require immediate medical attention |
I know the routine things the person I care for needs to do to look after their own health | ||
I know what healthcare services are available to help me | ||
Processing health information | Suggest including additional questions that explore caregiver’s capacity to identify relevant information | [How easy or difficult is it for you to…] Work out which sources have information that is relevant for the person I care for |
Supported by healthcare providers to understand information | (General comment) It is important for caregivers to understand what services and supports are available for the caregiver and care recipient | Healthcare providers have helped me understand services available for the person I care for |
Healthcare providers have helped me understand services available to support me | ||
Active engagement with healthcare providers | (General comment) It is important for caregivers to understand what services and supports are available for the caregiver and care recipient | Ask a healthcare provider to explain what healthcare services are available to help me provide care |
Self-care | Suggest including a question about physical activity or exercise | Despite other things in my life, I make sure I regularly exercise |