Forms, interactions, and responses to social support: A qualitative study of support and adherence to photoprotection amongst patients with Xeroderma Pigmentosum

Abstract

Objectives Social support influences adherence to treatment in chronic illness, but there is uncertainty about its facilitators and constraints. This study explored the forms, processes, and responses associated with mobilization of informal support across three life contexts amongst patients with Xeroderma Pigmentosum (XP), a condition requiring rigorous photoprotection to reduce cancer risks. Design Qualitative interview study. Methods A total of 25 adults with XP participated in semi‐structured interviews conducted face to face. An inductive thematic analysis was applied using a framework approach. Results Practical support, involving both assistance with recommended photoprotection and adjusting daily activities to reduce exposure, was the key form of support provided by family and friends. However, responses to this support differed with two groups identified based on the relative priority given to photoprotection in daily life and processes of disclosure. For ‘positive responders’, support aligned with their own priorities to photoprotect, conveyed feelings of being cared‐for and was facilitated by talking openly. In contrast, for ‘negative responders’ support conflicted with their priority of living ‘normally’ and their limited disclosure hindered receipt of helpful support in personal, clinic, and work interactions. Fears of workplace stigma also reduced disclosure amongst participants open in other contexts. Conclusions Practical support conveyed psychosocial support with positive effects on adherence. This suggests the traditional separation into practical and emotional support is overly simplistic, with measures potentially missing important aspects. Interactional processes contribute to the effects of support, which can be addressed by targeting disclosure, stigma, and other barriers at individual and organizational levels. What is already known on this subject? Social support can be both a facilitator and a hindrance to treatment adherence. Practical support is identified as the most important form of support in the context of adherence. The processes of support underpinning its relationship to adherence are unclear. What does this study add? Variations in the provision and impacts of support are influenced by participants’ disclosure and attitudes to photoprotection, with two key groups comprising ‘positive responders’ and ‘negative responders’. The influence of emotional support on adherence may be underestimated through neglect of the ways in which practical support often conveys feelings of being valued and cared‐for. Barriers to mobilizing effective adherence support extends across life spheres, with fears of stigma and discrimination in work settings highlighting the need to intervene at individual and organizational levels.

A Content Analysis of 100 Qualitative Health Research Articles to Examine Researcher-Participant Relationships and Implications for Data Sharing

“…Two non-medical researchers (RA/JW), experienced in qualitative interviewing, separately conducted the interviews and were accompanied on the home visit by a research nurse. The researchers and nurse were not known to the participants (Walburn et al, 2020, p. 91).…”

“…Examples of how we characterized “no relationship” include: “the researcher introduced herself to the participants” or “the researcher had no prior relationship with the participants.” If participants were recruited via a listserv or social media, the study was coded as “no relationships.” One study identified this lack of researcher-participant relationship as follows:Two non-medical researchers (RA/JW), experienced in qualitative interviewing, separately conducted the interviews and were accompanied on the home visit by a research nurse. The researchers and nurse were not known to the participants (Walburn et al, 2020, p. 91).…”

Improving photoprotection in adults with xeroderma pigmentosum: personalisation and tailoring in the ‘XPAND’ intervention

“…Given that the aim of XPAND was to improve protection, this group were not eligible for participation, although the observation of an emotional toll to good protection was a key consideration in the intervention design process. Additional themes relevant to photoprotection and illness adjustment were the experience and management of stigma (see Anderson et al, 2017 ) and the importance of social support (see Walburn et al, 2019c ). The cross-sectional survey (see Walburn et al, 2019a ) involved completion of a purpose-designed adherence to face and body photoprotection measure, where a total score was calculated by considering the relative protection afforded by different protection combinations, plus a single-item to measure avoidance of going outside as a means of protection (see Canfield et al, 2019 ).…”

“…Given that the aim of XPAND was to improve protection, this group were not eligible for participation, although the observation of an emotional toll to good protection was a key consideration in the intervention design process. Additional themes relevant to photoprotection and illness adjustment were the experience and management of stigma (see Anderson et al, 2017 ) and the importance of social support (see Walburn et al, 2019c ).…”

“…motivation, barriers and facilitators; phase I) that could be targeted to achieve change in the planned intervention (phase II). Outcomes of this formative research (Anderson, Walburn, & Morgan, 2017 ; Anderson, Walburn, & Morgan, 2019 ; Morgan, Anderson, Walburn, Weinman, & Sarkany, 2019 ; Sainsbury et al, 2018b ; Walburn et al, 2019a ; Walburn, Anderson, & Morgan, 2019c ) and the development of the intervention content based on phase I findings (Walburn et al, 2020 ) are reported separately. Briefly, this phase of research resulted in the establishment of 17 evidence statements around which the intervention would be designed and confirmed that, not only did adherence to photoprotection recommendations vary widely, so did the number and pattern of correlates of behaviour, lending further support to the a-priori decision that the planned intervention should be tailored.…”