Psychological and social characteristics of the patients
| Psychological and social variables, mean score (SD) | Self-caring adult Sample (n=21) | Patients cared for by a caregiver (children; non-self-caring cognitively impaired adults) Sample (n=15) | Total (n=36) |
| Illness perceptions (0–10) | |||
| ‘Consequences’ of XP on life (0 no effect; 10 severe effect) | 6.0 (3.3) | 9.2 (1.4) | 7.3 (3.1) |
| Timeline or duration of XP (0 a very short time; 10 forever) | 9.4 (2.2) | 9.7 (1.3) | 9.5 (1.9) |
| Personal control of XP (0 absolutely no control; 10 extreme amount of control) | 6.1 (2.6) | 4.1 (4.1) | 5.3 (3.4) |
| Photoprotection control of XP (0 not at all helpful; 10 extremely helpful) | 8.0 (2.5) | 9.8 (0.6) | 8.8 (2.1) |
| Treatment control of XP (0 not at all helpful; 10 extremely helpful) | 8.8 (1.8) | 9.2 (2.1) | 8.9 (1.9) |
| ‘Identity’, that is, symptom experience (0 no symptoms at all; 10 many severe symptoms) | 5.7 (2.9) | 7.0 (3.4) | 6.2 (3.1) |
| Illness concern (0 not at all concerned; 10 extremely concerned) | 6.6 (2.9) | 7.5 (2.8) | 7.0 (2.8) |
| Understanding of XP (0 do not understand at all; 10 understand very clearly) | 8.5 (1.4) | 6.3 (3.7) | 7.6 (2.8) |
| Emotional representation/impact of XP (0 not at all affected emotionally; 10 extremely affected emotionally) | 5.0 (3.5) | 7.0 (3.5) | 5.9 (3.6) |
| Beliefs about photoprotection (1 strongly disagree; 5 strongly agree) | |||
| Necessity (importance of UVR protection to the person’s health) | 3.9 (0.8) | 4.6 (0.8) | 4.2 (0.8) |
| Concern (concerns about negative impacts of UVR protection to the person’s health) | 2.9 (1.1) | 3.7 (0.6) | 3.2 (1.0) |
| Intention to photoprotect (1 strongly disagree; 7 strongly agree) | |||
| Intention to avoid going out in the next 7 days | 4.4 (2.4) | 4.5 (2.4) | 4.5 (2.4) |
| Intention to photoprotect outdoors (a variety of methods of photoprotection) in the next 7 days | 4.5 (0.9) | 5.2 (0.9) | 4.7 (1.0) |
| Confidence about ability to photoprotect (1 strongly disagree; 7 strongly agree) | |||
| Self-efficacy to photoprotect (Over the next 7 days I am confident I could … (a variety of methods of photoprotection) | 6.2 (1.4) | 6.6 (1.1) | 6.4 (1.3) |
| Self-efficacy to avoid going outside | 4.2 (2.0) | 4.1 (2.5) | 4.2 (2.2) |
| Degree to which photoprotection is enacted automatically (1 strongly disagree; 7 strongly agree) | |||
| Automaticity of photoprotection (a variety of methods of photoprotection) | 3.8 (1.5) | 5.3 (1.2) | 4.4 (1.6) |
| Automaticity to avoid going outside | 3.7 (2.9) | 4.9 (2.9) | 4.2 (2.9) |
| Social support (1 no support/very dissatisfied; 5 comprehensive support/very satisfied) | |||
| Level of social support | 3.9 (0.9) | 3.8 (1.3) | 3.8 (1.0) |
| Satisfaction with support | 4.1 (1.0) | 4.0 (1.3) | 4.1 (1.1) |
| Psychological well-being (SWEMWBS) (7–35) | 22.9 (5.8) | 23.0 (4.6) | 23.0 (5.3) |
SWEMWBS, short-form Warwick-Edinburgh Mental Well-Being Scale; UVR, ultraviolet radiation; XP, xeroderma pigmentosum.