Self-management goals and response to social support: a qualitative study of patients with Xeroderma Pigmentosum

Abstract

Background: Social support is known to be important in the self-management of chronic illness but there are questions of the processes involved and why responses vary. This study explored these issues among patients with Xeroderma Pigmentosum (XP) that requires a range of photoprotection measures to reduce cancer risks. Methods: Individual semi-structured interviews conducted with 25 adults with XP. Data were analysed using an inductive thematic analysis. Results were triangulated with clinical staff discussion groups. Findings: Support from family and friends included photoprotection assistance (e.g., reminders to wear hats; monitoring UV risk) and adjustment of daily activities to take account of the needs of XP. Response to this support differed. For some it facilitated their photoprotection, for others it was annoying and inappropriate. Congruency between support provided and the self-management goal of the participant underpinned this difference in response. For those whose priority was to maintain normality and avoid an XP identity, receiving support to facilitate photoprotection was at odds with this goal. Open disclosure about XP was a feature of the support process where self-management goals were aligned and these participants also felt emotionally supported. Disclosure was absent from those finding support unhelpful, as to disclose would be contrary to the goal of not being different. Discussion: Lack of congruence between the personal self-management goals of participants and the support provided, contributed to negative responses. Exploration of these goals and the role of disclosure could facilitate the use of informal support and improve self-management.