Table 3 Clinical characteristics of the caregivers
From: Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers
Measures | Scale/item range | Mean (SD) |
|---|---|---|
Subjective burnout (Zarit) | 0–88 | 30.18 (10.0) |
Coping strategies (CSI) | ||
 Problem solving (1) | 0–20 | 13.68 (5.86) |
 Cognitive restructuring (2) | 0–20 | 9.41 (6.15) |
 Social support (3) | 0–20 | 10.73 (6.39) |
 Emotional expression (4) | 0–20 | 8.86 (6.58) |
 Problem avoidance (5) | 0–20 | 4.82 (4.10) |
 Wishful thinking (6) | 0–20 | 10.10 (5.88) |
 Social withdrawal (7) | 0–20 | 3.63 (3.0) |
 Self-criticism (8) | 0–20 | 6.09 (6.59) |
 Problem focused engagement (1,2) | 0–40 | 23.10 (11.20) |
 Emotion focused engagement (3,4) | 0–40 | 19.59 (11.92) |
 Problem focused disengagement (5,6) | 0–40 | 14.91 (8.30) |
 Emotion focused disengagement (7,8) | 0–40 | 9.73 (8.69) |
 Engagement (1–4) | 0–80 | 42.68 (21.65) |
 Disengagement (5–8) | 0–80 | 24.64 (15.74) |
a Quality of Life (WHOQOL-BREF) | ||
 Physical domain | 0–100 | 65.58 (15.61) |
 Psychological domain | 0–100 | 61.17 (16.93) |
 Social Relationships | 0–100 | 53.03 (17.55) |
 Environmental domain | 0–100 | 60.31 (11.52) |
 Individual’s overall perception of quality of life | 0–100 | 48.86 (19.64) |
 Individual’s overall perception of their health | 0–100 | 60.23 (19.91) |
Spirituality, religiousness and personal beliefs (SRPB) | 0–20 | 9.91 (2.87) |
 Spiritual connection | 0–5 | 1.80 (1.11) |
 Meaning and purpose in life | 0–5 | 3.17 (1.09) |
 Experiences of awe and wonder | 0–5 | 2.74 (0.78) |
 Wholeness and integration | 0–5 | 2.72 (0.88) |
 Spiritual Strength | 0–5 | 2.10 (1.10) |
 Inner peace | 0–5 | 2.64 (0.93) |
 Hope | 0–5 | 2.95 (0.69) |
 Faith | 0–5 | 1.69 (1.09) |
Symptom Checklist 90R (SCL-90R) | ||
 Somatization | 0–4 | 1.0 (0.69) |
 Obsessive-compulsive | 0–4 | 0.85 (0.73) |
 Interpersonal sensitivity | 0–4 | 0.75 (0.71) |
 Depression | 0–4 | 1.15 (0.63) |
 Anxiety | 0–4 | 0.65 (0.65) |
 Hostility | 0–4 | 0.82 (0.67) |
 Phobic anxiety | 0–4 | 0.27 (0.40) |
 Paranoid ideation | 0–4 | 0.61 (0.59) |
 Pyschoticism | 0–4 | 0.39 (0.39) |
 Global Severity Index | 0–4 | 0.78 (0.49) |
 Positive Symptom Total | 0–90 | 39.36 (21.25) |
 Positive Symptom Distress Index | 0–4 | 1.73 (0.43) |
Social Network (SNQ) | 1–4 | 2.96 (0.59) |
 Social contact | 1–4 | 2.57 (0.52) |
 Instrumental support | 1–4 | 3.03 (0.90) |
 Affective support | 1–4 | 2.95 (0.81) |