Table 4.
Domains assessed by each measure
| Overarching theme | Specific domain | ACS | BASC | CQOLC | CRA | FACQ-PC | QOL-F | QOLLTI-F | ZBIa | N of measures (total N of items) | Example items (measure and subscale/factor name where relevant) |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Health of caregiver | Psychological health of caregiver | 4 | 1 | 6 | 2 | 7 | 2 | 6 (22) | Over the past 2 days (48 h) emotionally I felt…(QOLLTI-F carer’s own state) How much have you been depressed about X’s illness? (BASC) |
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| Physical health of caregiver | 2 | 1 | 4 | 2 | 5 | 1 | 1 | 7 (16) | As a caregiver I feel my own health has suffered (FACQ-PC—caregiver strain) I am healthy enough to care for X (CRA—health problems) |
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| Sexual activity | 1 | 1 | 2 (2) | I am satisfied with my sex life (CQOLC) | |||||||
| Lifestyle disruption | Lifestyle disruption | 3 | 1 | 5 | 3 | 1 | 1 | 6 (14) | Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? (ZBI) I have eliminated things from my schedule since caring for X (CRA—disrupted schedule) |
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| Impact on paid employment | 1 | 1 | 2 (2) | To what degree has your family member’s illness or treatment interfered with your employment? (QOL-F—social concerns) | |||||||
| Financial implications | 1 | 3 | 3 | 1 | 1 | 1 | 6 (10) | How much financial burden resulted from your family member’s illness or treatment?(QOL-F—social concerns) | |||
| Time for self, social life and leisure | 2 | 1 | 1 | 2 | 2 | 2 | 2 | 5 | 8 (17) | I have had to give up my social life to care for X (FACQ-PC—caregiver strain) Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself? (ZBI) |
|
| Relationships | Impact on relationship with care recipient | 1 | 2 | 1 | 1 | 1 | 2 | 6 (8) | Caring for X has made me feel closer to him/her (FACQ-PC—positive caregiving appraisal) Distress of seeing how much X’s illness has changed your relationship (BASC) |
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| Relationships with other family members and friends: | |||||||||||
| Communication | 1 | 4 | 1 | 3 (6) | Our family is able to talk about our feelings with each other (FACQ-PC—family well-being) | ||||||
| Relationships | 3 | 2 | 1 | 1 | 1 | 5 (8) | My relationships with friends and family are not affected by this situation (ACS—general stress) | ||||
| Support | 3 | 5 | 1 | 1 | 4 (10) | It is very difficult to get help from my family in taking care of X (CRA—lack of family support) | |||||
| Impact on other family members | 1 | 1 | 2 (2) | I worry about the impact my loved one’s illness has had on my children or other family members (CQOLC—burden) | |||||||
| Well-being | Confidence, self-esteem and self-efficacy | 4 | 1 | 3 | 7 | 3 | 2 | 4 | 7 (24) | Taking care of X makes me feel good about myself (BASC) Do you feel you could do a better job in caring for your relative? (ZBI) |
|
| Spiritualityb | 1 | 3 | 1 | 3 (5) | Over the past 2 days (48 h) I was comforted by my outlook on life, faith or spirituality (QOLLTI-F—carer’s outlook) | ||||||
| Bringing purpose and meaning to life | 2 | 1 | 2 | 3 | 2 | 2 | 1 | 7 (13) | I am glad my focus is on getting my loved one well (CQOLC—positive adaptation) Taking care of X has brought meaning to my life (BASC) |
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| Managing the situation | Coping | 1 | 1 | 1 | 1 | 1 | 5 (5) | The responsibility I have for my loved one’s care at home is overwhelming (CQOLC—disruptiveness) | |||
| Concerns for the future | 4 | 1 | 1 | 3 (6) | How much uncertainty do you feel about your family member’s future? (QOL-F—spiritual well-being) I worry that in the future I will not be able to help the person needing my care (ACS—threat) |
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| Concerns/distress about the health/care of recipient | 3 | 6 | 6 | 4 | 4 (19) | I fear the adverse effects of treatment on my loved one (CQOLC—burden) Over the past 2 days (48 h) the quality of health care we received was….(QOLTTI-F—quality of care) |
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| Burden | 1 | 1 | 1 | 2 | 4 (5) | Overall how burdened do you feel caring for your relative? (ZBI) | |||||
| Total number of items | 27 | 14 | 35 | 24 | 25 | 37 | 16 | 16 | 194 |
aWe have only included the items from the Zarit Burden Inventory which are used in one of the short forms of the scale evaluated in the paper by Higginson et al. [20]
bItems categorised under the domain “spirituality” make direct reference to spirituality, faith, prayer, church/temple, etc