Modes of adjustment and adherence with photoprotection: a qualitative study of Xeroderma Pigmentosum patients

Abstract

Background: This study of patients with a rare genetic condition, Xeroderma Pigmentosum (XP), goes beyond traditional approaches in explaining adherence and non-adherence and examines photoprotection behaviours (use of sunscreen, covering up and other avoidance measures) in the context of patients’ broader adjustment to this chronic condition. Methods: Qualitative design based on semi-structured interviews conducted at home with 23 patients (17 men and 6 women, aged 16-63 years) recruited from a specialist XP centre in London, UK. Transcripts coded, entered into NVivo10 and analysed thematically based on a Framework approach. Triangulation of findings was undertaken through clinical discussion groups and measurement of adherence in the clinical setting. Findings: Participants were categorised into three modes of adjustment to XP: 1) Dominated: fears of cancer and reducing risks through high photoprotection was central to their lives, involving considerable activity restrictions and a high emotional burden, 2) Integrating: photoprotection integrated with other aspects of individuals lives as a ‘habit’ and ‘just something I do.’ High integration associated with particular life circumstances and a level of adherence that participants regarded as reducing their risks, whereas small numbers had lower integration/adherence although accepting the need for photoprotection, 3) Resistant: participants resisted acknowledging XP to avoid an illness identity with very ‘patchy’ photoprotection. These categories were validated by XP specialists and qualitative descriptions of adherence were supported by clinical measurement. Discussion: Patients’ modes of adjustment to a chronic condition contributes to explanations of adherence behaviours and informs clinical communication and strategies for facilitating better self-management.