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Table 3 Domain 3 “Role of the caregiver and individuality

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

Questions Answers n (%)
Do you think you can help improve the symptoms of your family member or partner? Yes: 47 (50%)
  No: 47 (50%)
Would you like to play a more active role in the treatment decisions of your family member or partner? Yes: 38 (40%)
  No: 56 (60%)
Do you think you are helpful for your family member or partner? Yes: 74 (79%)
  No: 19 (20%)
  No: opinion 1 (1%)
Are you able to find moments of leisure and fun for you? Never: 4 (4%)
  Rarely: 28 (30%)
  Sometimes: 33 (35%)
  Often: 19 (20)
  Always: 10 (11%)
Do you perceive that your family member or partner is asking for more help than needed? Never: 36 (38%)
  Rarely: 28 (30%)
  Sometimes: 17 (18%)
  Often: 11 (12%)
  Always: 2 (2%)
Do you think you have enough time for you? Never: 2 (2%)
  Rarely: 28 (30%)
  Sometimes: 25 (27%)
  Often: 21 (22%)
  Always: 18 (19%)
Do you think that your role should be better taken into account? Yes: 30 (32%)
  No: 33 (35%)
  No opinion 31 (33%)
Do you think you can freely express your emotions? Yes: 50 (53%)
  No: 33 (35%)
  No opinion: 11 (12%)
Do you think you need psychological support in order to better help your family member or partner? Yes: 23 (24%)
  No: 48 (51%)
  No opinion: 24 (25%)
Would you need psychological support for yourself? Yes: 29 (31%)
  No: 46 (49%)
  No opinion:19 (20%)
How do you generally assess the quality of life of your family member or partner? 1 – Worst option: 12 (13%)
  2: 14 (15%)
  3: 43 (46%)
  4: 24 (25%)
  5 – Better option: 1 (1%)