Characteristics of the informal caregivers
| N=77 | |
| N (%) M±SD Med (IQR) | |
| 1. Sociodemographics | |
| Age (years) | 41.4±10.2 |
| 42 (34–47) | |
| Gender | |
| Men | 28 (36.8) |
| Women | 48 (63.2) |
| Nature of relationship with the PLH individual | |
| Parents | 69 (89.6) |
| Others* | 7 (9.1) |
| Marital status | |
| Not single | 65 (84.4) |
| Single | 11 (14.3) |
| Couple with the other parent of the PLH individual | 57 (74.0) |
| Number of children | 3 (2–4) |
| Other person with disability living home | 8 (10.4) |
| Educational level | |
| <12 years | 35 (45.5) |
| ≥12 years | 42 (54.5) |
| Occupational status | |
| Not worker | 38 (49.4) |
| Worker | 38 (49.4) |
| Self-perceived financial status | |
| Not difficult | 49 (63.6) |
| Difficult | 26 (33.8) |
| 2. Health | N (%) |
| Personal chronic disease(s) | 22 (28.6) |
| Hospitalisation episode during the last 2 years | 18 (23.4) |
| 3. Psycho-behavorial characteristics | N (%) |
| Quality of life (WHOQoL scores) (0–100)† | |
| Physical | 61.5±19.3 |
| Psychological | 65.8±15.7 |
| Social | 60.8±19.5 |
| Environmental | 58.7±13.9 |
| Anxiety–mood score (1–10)‡ | |
| Mean±SD | 5.9±2.4 |
| Coping strategies (Brief-COPE scores) (0–100)§ | |
| Social support | 39.5±19.7 |
| Problem solvings | 57.8±22.18 |
| Avoidance | 19.4±11.5 |
| Positive thinking | 53.9±20.2 |
| 4. Burden | N (%) |
| Number of children living at home | 2 (2–3) |
| Daily time caregiving (hours) | |
| ≤4 | 16 (20.8) |
| (5–8) | 26 (33.8) |
| ≥9 | 30 (39.0) |
| Get up during night | |
| Never | 10 (13.0) |
| 1 | 23 (29.9) |
| ≥2 | 39 (50.7) |
| Self-perceived reaction (CRA scores) impact (0–100) | |
| Self-esteem¶ | 81.1±11.5 |
| Familial support** | 53.1±17.7 |
| Financial** | 59.4±21.7 |
| Scheduling/planification** | 69.7±18.4 |
| Health** | 55.1±19.9 |
*Others: 2 aunts, 2 grand-parents, 1 sibling, 1 cousin, 1 extra-familial relationship.
†Higher scores: higher QoL level.
‡Higher score: higher anxiety/mood disorder.
§Higher scores: higher use of the strategy.
¶100: best self-esteem.
**100: worse familial support, worse financial impact, worse planification impact, worse health impact.
Brief-COPE, Brief Coping Orientation to Problems Experienced Scale; CRA, caregiver reaction assessment; PLH, polyhandicap; WHOQoL, WHO Quality of Life.