Plain English summary
Introduction
Methods
Participant recruitment and data collection
Data analysis
Results
Phase 1: cognitive interviews to develop questionnaire content
Participant | Gender | Relationship | Patient’s LTCs | Carer’s LTCs | Key points raised | Response |
---|---|---|---|---|---|---|
1 | Male | Partner living with patient | Alzheimer’s, bowel problems, blood pressure management, worsening eyesight | (no LTCs mentioned) | Felt questions would be more relevant as illness progressed; answered easily to indicate minimal impact on himself at the moment. Wanted N/A response option for Q13, which he found least relevant (interpreted ‘services’ as social care) | For Question 13, ‘Not applicable’ added to response option for no services used in past four weeks |
2 | Male | Adult child, living at different address to patient (same town) | Dementia/Alzheimer’s | (no LTCs mentioned) | Suggested content on impact of relationship with patient. Expand examples of ‘everything you need’ for Q6. Noted that his mother (primary carer) would have answered questions differently and that his responses might change over time. Saw value in repeat measures, if questionnaire responses led to action/support | Amended Question 6 to make the wording more generalised, prompted for meaning in round 2 interviews |
3 | Female | Spouse living with patient | Mild cognitive impairment, diabetes | (no LTCs mentioned) | Thought the questionnaire would show change as patient’s memory problems worsened. Valuable if it prompts support and action. Found Q12 hard to interpret | Amended Question 12 to wording suggested by participant |
4 | Male | Adult child living with patient | Dementia/Alzheimer’s | (no LTCs mentioned) | No missing content. Q13 hardest to answer (unsure what ‘services’ covered). Q6 need to refer to more than ‘equipment’. Value of questionnaire in prompting discussion of issues that carers might be reluctant to raise or that might change over time. But in the absence of feedback it could be frustrating to complete | Amended Question 6 to make the wording more generalised, prompted for meaning in round 2 interviews |
5 | Female | Partner living with patient | Memory problems (diagnosis not specified), heart condition, kidney problems, knee problems | Emphysema | Suggested additional question on getting enough time to yourself. Suggested expanding response options to include ‘usually’. Thought questionnaire would be more relevant to people with more caring responsibilities and could show changes over time | Added new item on having enough time to yourself |
6 | Female | Spouse living with patient | Dementia, heart condition | Chronic pain, depression, hip replacement | Being asked the questions ‘takes a bit off your shoulders’ because ‘I don’t talk to everyone like this’. Q16 most difficult to answer because response options do not capture changes in knowledge/skills over time | After discussion, no changes made (changes in knowledge would be captured by repeat measures) |
7 | Male | Spouse living with patient | Memory problems (diagnosis not specified) | (no LTCs mentioned) | Generalised but relevant content. Suggested splitting ‘coping’ into physical and emotional domains. Useful for monitoring carer’s well-being over time, and thought that responses could reflect changes in carer’s health status, but needs to be balanced with burden of frequent questionnaire completion | After discussion, no changes made (no problems with item completion; consistency with validated LTCQ item) |
8 | Female | Spouse living with patient | Alzheimer’s/dementia, Parkinson’s, COPD, depression | angina, Morton’s neuroma (nerve pain in feet affecting mobility), diabetes | Valued questionnaire as a monitoring tool and would want access to responses to self-monitor. Some questions could be difficult to answer over a 4-week timeframe because of daily changes in own health. Difficult to distinguish the impact of caring versus health generally for question on physical activity. Preferred ‘most of the time’ to ‘often’ as a response option | After discussion, no changes made (no problems using current response options; consistency with LTCQ response options) |
9 | Female | Spouse living with patient | Short-term memory loss, low mood, bladder cancer, gall stones | (no LTCs mentioned) | ‘Nice and easy’ to complete as she saw husband’s condition as mild and did not self-identify as a ‘carer’. Saw value in filling out questionnaire as part of memory clinic assessment, but would be put off by a lack of direct feedback from staff | (No suggestions for changes) |
10 | Female | Adult child, living at different address to patient (in walking distance) | Dementia, previous heart attacks | (no LTCs mentioned) | All items relevant, but noted health impacts (Q10) could be different for physical versus mental health. Felt that confidence to manage would change with mother’s condition deteriorating. Main concern was that caring was framed entirely as burden, with no questions on positive impacts | Amended Q12 wording for consistency with other items |
Phase 2: pilot survey for initial validation of LTCQ-Carer
Acceptability, internal consistency, and structural validity
Percent for each item response option | Item-total correlations | Factor loadingsb | ||||||
---|---|---|---|---|---|---|---|---|
LTCQ-Carer item | Never | Rarely | Sometimes | Often | Always | (missing) | ||
1. Felt able to cope well with giving care and support | 0 | 0 | 24.3 | 32.7 | 42.1 | 0.9 | 0.73 | 0.76 |
2. Felt able to fulfil other responsibilities | 0 | 6.5 | 22.4 | 31.8 | 39.3 | 0.81 | 0.84 | |
3. Able to be as physically active as you want | 4.7 | 13.1 | 20.6 | 21.5 | 40.2 | 0.80 | 0.83 | |
4. Felt in control of daily life | 4.7 | 8.4 | 20.6 | 27.1 | 39.3 | 0.81 | 0.84 | |
5. Able to take part in enjoyable activities | 6.5 | 9.3 | 29.9 | 15.9 | 38.3 | 0.78 | 0.80 | |
6. Have everything you need when giving support | 0.9 | 7.5 | 30.8 | 18.7 | 41.1 | 0.9 | 0.69 | 0.71 |
7. Felt safe inside the home when giving support | 0 | 0 | 7.5 | 18.7 | 73.8 | 0.42 | 0.43 | |
8. Felt safe outside the home when giving support | 1.9 | 0.9 | 7.5 | 24.3 | 64.5 | 0.9 | 0.45 | 0.47 |
9. Felt as independent as you want | 3.7 | 9.3 | 29.9 | 23.4 | 33.6 | 0.78 | 0.82 | |
10. Felt your health has been affected by giving supporta | 32.7 | 15.9 | 30.8 | 12.1 | 8.4 | 0.59 | 0.59 | |
11. Felt lonely due to giving care and supporta | 40.2 | 18.7 | 28 | 8.4 | 4.7 | 0.53 | 0.53 | |
12. Felt people were not understanding about your caring responsibilitiesa | 25.2 | 24.3 | 31.8 | 13.1 | 4.7 | 0.64 | 0.65 | |
13. Found services you use in relation to giving care and support difficult to cope witha | 66.4 | 9.3 | 9.3 | 7.5 | 2.8 | 4.7 | 0.45 | 0.46 |
14. Found treatments taken by the person you care for difficult to cope witha | 56.1 | 20.6 | 15 | 3.7 | 1.9 | 2.8 | 0.51 | 0.51 |
15. Felt giving care and support made you unhappya | 30.8 | 23.4 | 31.8 | 8.4 | 2.8 | 2.8 | 0.66 | 0.68 |
16. Felt you knew enough about how to give support | 4.7 | 15.9 | 24.3 | 25.2 | 28 | 1.9 | 0.48 | 0.48 |
17. Had enough social contact with other people | 2.8 | 8.4 | 22.4 | 24.3 | 40.2 | 1.9 | 0.70 | 0.72 |
18. Had enough help in giving care and support | 3.7 | 12.1 | 26.2 | 21.5 | 29.9 | 6.5 | 0.71 | 0.72 |
19. Felt you get enough time to yourself | 9.3 | 14 | 23.4 | 22.4 | 29 | 1.9 | 0.74 | 0.76 |
20. Felt confident in managing daily caring responsibilities | 0.9 | 5.6 | 22.4 | 29 | 40.2 | 1.9 | 0.77 | 0.79 |
21. Felt able to live your life as you want | 8.4 | 18.7 | 18.7 | 24.3 | 28 | 2 | 0.83 | 0.86 |
Sample characteristics | N (%) | LTCQ-Carer mean score (SD, SE) | EQ-5D mean index value (SD, SE) | EQ VAS mean score (SD, SE) | ASCOT-Carer mean score (SD, SE) |
---|---|---|---|---|---|
Total sample | 107 (100%) | 72.5 (19.3, 1.9) | 0.84 (0.18, 0.02) | 75.8 (19.8, 1.9) | 15.3 (4.4, 0.4) |
(range: 25–100)a | (range: 0.07–1.0)a | (range: 0–100)a | (range: 2–21)a | ||
Age (range: 41–90 years) | |||||
Under 60 years | 34 (32%) | 68.1 (19.4, 3.3) | 0.87 (0.15, 0.02) | 75.3 (18.9, 3.2) | 15.5 (4.4, 0.8) |
60–79 years | 56 (52%) | 73.8 (19.0, 2.6) | 0.84 (0.17, 0.02) | 77.1 (19.6, 2.6) | 15.7 (3.8, 0.6) |
80 years or older | 17 (16%) | 77.6 (19.2, 4.8) | 0.76 (0.24, 0.06) | 72.6 (22.9, 5.6) | 15.3 (4.4, 0.9) |
Gender | |||||
Female | 67 (63%) | 71.6 (19.4, 2.4) | 0.82 (0.18, 0.02) | 74.7 (20.8, 2.6) | 15.2 (4.4, 0.6) |
Male | 37 (35%) | 73.4 (19.6, 3.2) | 0.87 (0.18, 0.03) | 77.7 (18.5, 3.0) | 15.3 (4.4, 0.7) |
Ethnicity | |||||
White | 100 (94%) | 72.9 (19.4, 2.0) | 0.84 (0.18, 0.02) | 76.3 (19.9, 2.0) | 15.4 (4.4, 0.4) |
Non-white | 3 (3%) | 53.5 (10.4, 6.0) | 0.82 (0.11, 0.07) | 55.0 (13.2, 7.6) | 11.3 (1.5, 0.9) |
Marital status* | |||||
Married/partnership | 87 (81%) | 73.3 (20.0, 2.2) | 0.83 (0.18, 0.02) | 75.8 (20.0, 2.2) | 15.6 (4.4, 0.5)* |
Not married/not in partnership | 16 (15%) | 65.7 (14.5, 3.6) | 0.86 (0.18, 0.04) | 75.1 (20.5, 5.1) | 13.1 (4.1, 1.0)* |
Health conditions** | |||||
No LTCs | 46 (43%) | 74.5 (16.4, 2.4) | 0.89 (0.11, 0.02)** | 80.6 (18.4, 2.7)** | 15.7 (3.6, 0.5)** |
One LTC | 34 (32%) | 74.4 (20.7, 3.6) | 0.84 (0.13, 0.02)** | 77.4 (18.4, 3.1)** | 16.5 (4.0, 0.7)** |
2 or more LTCs | 27 (25%) | 66.9 (21.4, 4.1) | 0.74 (0.26, 0.05)** | 65.9 (20.9, 4.0)** | 13.0 (5.1, 1.0)** |
Construct validity
Responsiveness
Health at Survey 2 compared to Survey 1 | N | Mean LTCQ-Carer score—Survey 2 (SD, SE) | Mean LTCQ score—Survey 1 (SD, SE) | Mean change in LTCQ score (SD, SE) |
---|---|---|---|---|
Better than 4 months ago | 4 | 73.5 (9.0, 4.5) | 70.5 (21.2, 10.6) | 2.97 (15.9, 7.9)a |
About the same as 4 months ago | 33 | 80.1 (14.2, 2.5) | 80.6 (14.9, 2.6) | − 0.47 (7.1, 1.2)a |
Worse than 4 months ago | 14 | 53.8 (9.7, 2.6) | 53.2 (11.6, 3.2) | 0.68 (9.6, 2.7)a |
Total | 51 | 72.0 (17.5, 2.5) | 72.6 (18.7, 2.6) | 0.11 (8.5, 1.2)a |