Table 2

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 days4.4 (2.4)4.5 (2.4)4.5 (2.4)
Intention to photoprotect outdoors (a variety of methods of photoprotection) in the next 7 days4.5 (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 outside4.2 (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 outside3.7 (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 support3.9 (0.9)3.8 (1.3)3.8 (1.0)
Satisfaction with support4.1 (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.