Skip to main content

Advertisement

Table 3 Ease of understanding and relevance of the original 41 CBQ-HF v1.0 items

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)
  1. Key:
  2. Item in italicised text: item deleted after first 9 interviews.
  3. Item in bold text: item deleted after 18 interviews.
  4. * Item wording modified after 18 interviews.