The influence of perceived medical risks and psychosocial concerns on photoprotection behaviours among adults with xeroderma pigmentosum: a qualitative interview study in the UK

BackgroundA high level of photoprotection is required by people with xeroderma pigmentosum (XP), a rare skin disease, to reduce skin cancer and other risks. However poor photoprotection is thought to be widespread.PurposeThis study examines the influences on photoprotection behaviours in adults with XP.DesignInductive qualitative study with semistructured interviews. Analysis employed a framework approach.SettingNational sample recruited through a specialist XP centre in London.MethodsSemistructured interviews at patients’ homes. All transcripts were coded and themes charted for each participant. Comparisons within and across cases identified common themes and differing motivations and approaches to photoprotection. Credibility of interpretations assessed through patient/carer input and clinic adherence scores.Participants25 adults (17 male, eight female) aged 16–63 years with diagnosed XP attending a specialist centre. 18 lived outside London.ResultsAwareness of risks of ultraviolet radiation (UVR) and photoprotection was high. However, photoprotection behaviours varied according to perceived necessity and concerns. Three behavioural responses were identified: (1) ‘dominated’ by planning and routines to achieve a high level of photoprotection with significant activity restrictions and psychosocial impacts. (2) ‘resistant’ to photoprotection with priority given to avoiding an illness identity and enjoying a normal life. (3) Photoprotection’ integrated’ with an individual’s life with little psychosocial impact. These responses were influenced by illness, personal and contextual factors including age, life stage and social support. Only the ‘integrated’ group achieved an equilibrium between perceived ‘necessity’ and ‘concerns’.ConclusionsThe personal balance between perceived risks of UVR and social/psychological ‘concerns’ led to differing behavioural responses and contributes to an understanding of adaptation and normalisation in chronic illness. The study will also inform a series of individualised behavioural interventions to reduce measured UVR exposure among people with XP that are potentially applicable to other conditions with high risks of skin cancer.