From: The Caregiver Burden Questionnaire for Heart Failure (CBQ-HF): face and content validity
Concept | Sub-concept | Item wording (‘During the past 4 week,…’) | Correct interpretation of item | No issue with item wording | Relevant to CHF caregiving experience | Example quote for relevance |
---|---|---|---|---|---|---|
Physical burden | Tiredness | 1…how much has caregiving made you feel physically tired? | 17/18 | 17/18 | 14/18 | “It’s so much to be done every day that I think I have been really tired” (04-06) |
Deterioration of own health (2 items) | 2…how much has caregiving caused you health problems? | 18/18 | 18/18 | 9/18 | “because I have to be more active and on my feet with him, I have a little stress fracture in my foot.” (03-07) | |
3…how much has caregiving made you neglect your own health | 17/18 | 17/18 | 13/18 | “doctor’s appointments and things like that, and I’ve been kind of pushing it back because of the time I’m doing this” (04-02) | ||
Physical effort | 4…how much physical effort has it taken you to do caregiving tasks?* | 13/18 | 13/18 | 9/18 | “Somewhat, because I have to go physically, food shopping, cleaning up her place, doing things like that” (04-05) | |
Lack of sleep | 5…how much has caregiving made it difficult to sleep? | 18/18 | 18/18 | 11/18 | “I wake up in the middle of the night, I want to make sure that he’s OK” (03-05) | |
Body aches | 6…how much has caregiving made your body ache?* | 12/18 | 17/18 | 8/18 | “when I pick her up. And prop her up, and I’ll tweak my back a little bit” (03-02) | |
Emotional/ psychological burden | Overly depended upon (2 items) | 7…how much have you felt like you need to do more for the person you care for?* | 15/18 | 18/18 | 14/18 | “I feel like I need to do more for her, but I really can’t.” (03-08) |
8…how much have you felt overly relied upon by the person you care for | 18/18 | 18/18 | 12/18 | “He asks a lot of me…he just don’t realize how much I do. And you feel like you don’t get credit” (04-09) | ||
Guilty (2 items) | 9…how guilty have you felt because the time you spent caregiving limited what you can do for others? | 15/18 | 17/18 | 12/18 | “I wanted to take care of her [friend’s]dog while she’s in the hospital, but I couldn’t do that, and I can’t spend time with her as much as I would like to” (03-03) | |
10…how guilty have you felt because you cannot do enough for the person you care for? | 17/18 | 18/18 | 11/18 | “Because I always feel a little guilty about not spending more time with her” (03-02) | ||
Frustrated | 11…how much has caregiving made you feel frustrated? | 18/18 | 18/18 | 14/18 | “It’s very frustrating knowing you’ve given him good advice and he’s not following it.” (03-04) | |
Stressed | 12…how much has caregiving made you feel stressed? | 15/18 | 17/18 | 14/18 | “Every minute, every day. You know, there’s so much stress with medicines…I keep expecting to walk into the room and see him slumped over, and it’s just very stressful” (04-01) | |
Resentment | 13…how much has caregiving made you feel resentful? | 15/18 | 15/18 | 6/18 | “I resent when she gives me the guilties.” (03-06) | |
Sad | 14…how much has caregiving made you feel sad? | 18/18 | 18/18 | 15/18 | “feeling sad, make me cry, because I know that he might die” (03-03) | |
Angry | 15…how much has caregiving made you feel angry? | 8/9 | 8/9 | 4/9 | “He does make me mad at him when he doesn’t listen to what I say”(03-03) | |
Depressed | 16…how much has caregiving made you feel depressed? | 16/18 | 17/18 | 11/18 | “Definitely a lot. If I didn’t have to get out of bed for my four-year-old, I think maybe I’d stay in [bed]” (04-01) | |
Inability to focus or concentrate | 17…how much has caregiving made it difficult to concentrate on other things?* | 16/18 | 17/18 | 12/18 | “But when I’m constantly interrupted with phone calls during the work day, that's difficult for me” (03-06) | |
Worry | 18…how much has caregiving made you worry about the person you care for? | 18/18 | 18/18 | 13/18 | “I always worry about her a little. Because it’s easy for her to fall” (03-02) | |
Mentally tired | 19…how much has caregiving made you feel mentally tired? | 17/18 | 17/18 | 13/18 | “it does make me mentally tired when he challenges me” (03-03) | |
Emotionally drained | 20…how much has caregiving made you feel emotionally drained? | 18/18 | 18/18 | 15/18 | “there’s some draining in wanting to appease him while taking care of others (03-04) | |
Overwhelmed | 21…how much has caregiving made you feel overwhelmed? | 17/18 | 17/18 | 12/18 | “There are just times where I just get to the point where I can’t do this anymore” (03-07). | |
Helpless | 22…how much has caregiving made you feel helpless? | 15/18 | 15/18 | 7/18 | “it’s just like, now I can’t do this, you know? I just - I can’t help him.” (03-03) | |
Inability to cope | 23…how much has caregiving made you feel like you can’t cope? | 8/9 | 8/9 | 6/9 | “there are times where I had enough” (03-07) | |
Isolation/ loneliness | 24…how much has caregiving made you feel lonely? | 18/18 | 18/18 | 9/18 | “I don’t have any friends, basically.” (03-07) | |
Support from others | 25…how much support have you had from family or friends? | 18/18 | 18/18 | 14/18 | “my other family we all share and help with my grandmother” (04-04) | |
Dislike caregiving (2 items) | 26…how uneasy have you felt while carrying out a personal care task for the person you care for (for example bathing or dressing them)? | 8/9 | 8/9 | 0/9 | “He’s my husband. I don’t feel uneasy.” (03-04). | |
27…how much have you enjoyed caregiving? | 18/18 | 18/18 | 14/18 | “I’m glad that I can provide that service to her” (03-02) | ||
Social burden | Impact on relationship with patient | 28…how much has caregiving caused problems in your relationship with the person you care for? | 18/18 | 17/18 | 11/18 | “he gets frustrated, and it causes arguments between the two of us(03-07). |
Impact on relationships with partner and family (2 items) | 29…how much has caregiving caused problems in your relationship with your partner or family? | 8/9 | 8/9 | 4/9 | “And I don’t always discuss everything with her [daughter]…because I don’t want her to know how bad off her dad is. (03-03) | |
30… how much has caregiving limited the time you spent with your partner or family?* | 18/18 | 18/18 | 10/18 | “there are times when I can’t do other things because I’m caring for her” (04-08) | ||
Impact on relationships with friends (2 items) | 31…how much has caregiving caused problems in your relationships with friends? | 8/9 | 8/9 | 4/9 | “because of how limited I am with my time to spend with them” (03-04) | |
32…how much has caregiving limited the time you spent with friends? | 18/18 | 18/18 | 9/18 | “we never go nowhere - with our friends no more. Never” (04-09) | ||
Impact on intimate relationships (2 items) | 33…how much has caregiving made it difficult to date? | 8/9 | 8/9 | 6/9 | “I’m thinking of a single person that’s caregiving for someone else.” (03-04) | |
34…how much has caregiving caused problems with your sex life? | 9/9 | 9/9 | 7/9 | “We have not had sex. He just haven’t felt like it.” (03-05). | ||
Lifestyle burden | Lack of time for self (2 items) | 35…how much have you felt like you have had enough time for yourself?* | 18/18 | 18/18 | 15/18 | “I feel like I have no down time” (04-05). |
36…how much has caregiving limited time spent doing things for yourself? (for example going to the doctors for your own health)? | 9/9 | 8/9 | 5/9 | “ I don’t do things for myself…because I put other people first ” (03-07) | ||
Lack of time to do non-caring tasks | 37…how much has caregiving made you feel unable to do the things you want to do? | 18/18 | 18/18 | 11/18 | “It limits me from doing so many things that I would like to do, like travel.” (03-02). | |
Avoid making plans or having to change plans | 38…how much has caregiving caused you to change your plans or made you avoid making plans? | 18/18 | 18/18 | 16/18 | “A little, because we’re going to a wedding. And when he got tests coming up we’ll cancel.” (04-07) | |
Unable to go on vacations or trips (2 items) | 39…how much has caregiving limited you travelling? | 17/18 | 17/18 | 10/18 | “It’s my mother’s birthday this weekend, and I would have gone down for the whole weekend, But now I cannot do that.” (03-03) | |
40…how much have you felt you cannot be away from the person you care for? | 18/18 | 18/18 | 13/18 | “She needs me and I need her. Just to check on each other, you know.” (03-08) | ||
Reduced working hours | 41… how much has caregiving made it difficult to do paid work? | 15/18 | 15/18 | 11/18 | “I can only work part-time, and, uh, that’s even - some - at times difficult (03-07) |