Reduced and categorised list of caregiver generated challenges and item means
| Item | Original item number prior to item reduction* | Mean rating of challenge importance (1–10) | Participants who rated the item (n) |
| Physical health concerns | |||
| Experiencing fatigue and physical exhaustion | 3, 84 | 6.3 | 8 |
| Having trouble sleeping | 8 | 5.0 | 2 |
| Taking care of my health | Not applicable† | ||
| Financial problems and work or employment problems | |||
| Balancing caregiving and demands associated with my job | 2 | 6.0 | 2 |
| Having to take days off from work due to caregiving responsibilities | 1, 63 | 4.3 | 8 |
| Managing the cost of drugs and medical care | 30 | 8.5 | 2 |
| Managing loss of income due to my care recipient’s inability to work | 31, 72 | 6.4 | 8 |
| Role strain | |||
| Balancing caregiving and other family responsibilities | 10 | 6.5 | 2 |
| Managing last minute changes due to the unpredictability of the disease | 64 | 3.8 | 6 |
| Having to do all of the winter chores alone due to my care recipient’s sensitivity to cold temperatures | 79, 80 | 5.0 | 6 |
| Having to handle all of the household chores on my own | 45 | 6.0 | 5 |
| Being unable to help address my care recipient’s pain or discomfort | 5 | 4.0 | 2 |
| Finding time for myself | 11, 17 | 5.5 | 2 |
| Having to learn new skills and abilities because my care recipient can no longer do certain tasks | 76 | 4.3 | 6 |
| Having to make difficult medical decisions | 51 | 5.0 | 5 |
| Information, resources and support needs | |||
| Not having information about how to be a good caregiver | 37 | 9.0 | 2 |
| Not being able to find any answers as to why my care-recipient got scleroderma | 28 | 8.5 | 2 |
| Not having access to a caregiver support group | 36 | 10.0 | 2 |
| Not knowing other people who understand what I’m going through | 38 | 9.0 | 2 |
| Navigating healthcare issues while travelling | 75 | 7.0 | 6 |
| Planning trips and excursions while managing limitations, such as needing wheelchair access or other considerations | 73 | 6.0 | 6 |
| Having difficulty finding reliable and accurate information about scleroderma | 20, 87 | 6.4 | 8 |
| Having difficulty understanding important information about scleroderma and its treatment | 21, 54 | 5.1 | 7 |
| Having difficulty helping my care recipient gain access to knowledgeable health providers | 22, 23 | 7.5 | 2 |
| Navigating the medical system | 24 | 8.0 | 2 |
| Interacting with medical, insurance and social service agencies to address the needs of my care recipient | 29, 42, 61, 62 | 5.5 | 7 |
| Interacting with health professionals who are not knowledgeable about scleroderma | 47, 55 | 5.4 | 5 |
| Managing rushed, inconsiderate or insensitive behaviour from health professionals | 48, 52 | 5.1 | 5 |
| Trying to find useful devices to help my care recipient with activities of daily living | 82 | 4.0 | 6 |
| Finding assistance for things that my care recipient used to do | 19 | 5.0 | 2 |
| Fear, anxiety and uncertainty | |||
| Being fearful that I will be left alone | 27 | 8.5 | 2 |
| Constantly worrying about my care recipient’s limitations | 43 | 5.8 | 5 |
| Feeling uncertain about the progression of my care recipient’s scleroderma | 16, 89 | 8.0 | 8 |
| General emotional difficulties | |||
| Feeling helpless | 12 | 7.0 | 2 |
| Feeling hopeless | 13 | 3.0 | 2 |
| Managing my negative emotions towards my care recipient | 7 | 4.0 | 2 |
| Managing my stress and relaxing | 9 | 7.5 | 2 |
| Managing my negative emotions | 86 | 8.2 | 6 |
| Guilt about leaving my care recipient alone | 32 | 6.5 | 2 |
| Feeling ashamed to think about my own well-being or needs | Not applicable† | ||
| Emotional difficulties of the care recipient | |||
| Understanding the emotional needs of my care recipient | 66, 67 | 8.0 | 6 |
| Knowing what to do about my care recipient’s guilt | 83 | 5.5 | 6 |
| Providing emotional support to my care recipient on challenging days | 65 | 8.0 | 6 |
| Managing resentment from my care recipient towards me | 6 | 4.0 | 2 |
| Managing my care recipient’s anger about having scleroderma | 50 | 4.2 | 5 |
| Managing my care recipient’s feelings of depression | 57 | 4.0 | 5 |
| Managing my care recipient’s thoughts of ending her or his life | 60 | 3.0 | 5 |
| Managing the disappointment or frustration of my care recipient when she or he cannot take part in activities | 81 | 6.5 | 6 |
| Changes in relationship dynamics with care recipient | |||
| Understanding when my help isn’t wanted or needed | 39, 44 | 5.7 | 5 |
| Helping my care recipient set reasonable limits on activities that have become difficult due to scleroderma | 40 | 6.4 | 5 |
| Providing needed help when my care recipient doesn’t want it or resists it | 58, 71 | 5.9 | 11 |
| Being patient with the care recipient | Not applicable† | ||
| Finding the balance between interfering and providing care | 68, 77 | 6.8 | 6 |
| Helping my care recipient feel useful despite her or his physical limitations | 59 | 5.8 | 5 |
| Feeling a sense of loss because of activities we can no longer do together | 4, 15 | 5.8 | 2 |
| Accommodating my care recipient’s diet restrictions when we eat out | 85 | 4.2 | 6 |
| Discussing emotions or worries concerning scleroderma with my care recipient | Not applicable† | ||
| Dealing with loss of physical intimacy with my care recipient | Not applicable† | ||
| Changes in social interactions | |||
| Noticing others’ lack of knowledge and awareness about scleroderma | 14, 25, 26 | 9.2 | 2 |
| Managing social limitations, such as missing events or having to leave events early | 69 | 5.7 | 6 |
| Enjoying myself when spending time with friends without my care recipient | Not applicable† | ||
*items from original lists available in online supplementary appendix S3.
†item generated from Scleroderma Caregiver Advisory Team.