Skip to main content

Table 1 Domain 1 “Impact of BS on the caregiver

From: Being a caregiver of a Behçet’s syndrome patient: challenges and perspectives during a complex journey

Questions Answers n (%)
Has the illness of your family member or partner an influence on your life? 1—My life has not been influenced at all: 7 (7%)
  2: 19 (20%)
  3: 37 (39%)
  4: 21 (22%)
  5—My life has been completely influenced: 11 (12%)
Do you organise your life according to the needs of your family member or partner? Yes: 61 (65%)
  No: 33 (35%)
Do you feel stressed of having to take care of you family member or partner? 1—I am not at all stressed by having to take care of my family member: 31 (33%)
  2: 26 (28%)
  3: 25 (27%)
  4: 6 (6%)
  5—I am incredibly stressful by having to take care of my family member: 6 (6%)
Do you think that the illness of your family member or partner affects your relationship with your friends/family/partner? Yes: 21 (22%)
  No: 61 (65%)
  No opinion: 12 (13%)
Does the health status of your family member or partner affect your mood? Never: 2 (2%)
  Rarely: 22 (23%)
  Sometimes: 29 (31%)
  Often: 36 (38%)
  Always: 5 (5%)
How do you evaluate your mood? It tends to be stable: 31 (33%)
  It tends to be unstable: 12 (13%)
  I feel depressed: 2 (2%)
  It tends to be anxious: 25 (27%)
  It tends to be calm: 11 (12%)
  Alterations of anxiety moments of depression: 12 (13%)
How long do you work in providing care to your family member or partner (e.g. help with everyday activities or treatment management)? Less than 1 h per day: 58 (62%)
  1–2 h a day: 15 (15%)
  Between 2 and 4 h per day: 9 (10%)
  More than 4 h per day: 12 (13%)
Do you feel guilty because you would like to do more for your family member or partner? Never: 12 (13%)
  Rarely: 14 (15%)
  Sometimes: 24 (26%)
  Often: 32 (34%)
  Always: 11 (12%)
Do you have to take care of your home and family when your family member or partner does not feel okay? Never: 3 (3%)
  Rarely: 16 (17%)
  Sometimes: 25 (27%)
  Often: 23 (24%)
  Always: 27 (29%)