Experiences of stigma over the lifetime of people with xeroderma pigmentosum: A qualitative interview study in the United Kingdom

Anderson, Rebecca J.; Walburn, Jessica; Morgan, Myfanwy

doi:10.1177/1359105317714643

Cited by 22 publications

(28 citation statements)

References 18 publications

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“…Given the cross-sectional design, we do not know whether this is driven by photoprotection preferences or whether it is a consequence of emotional distress. The burden of living with XP includes stigma related to changes in appearance, constant UVR monitoring, and worries about skin cancer (Anderson et al, 2017;Morgan et al, 2019). Further research needs to investigate the prevalence of emotional distress associated with photoprotection in XP to ascertain if there is something intrinsic about photoprotection that is detrimental to well-being.…”

Section: Discussionmentioning

confidence: 99%

“…The importance of treatment beliefs, and to a lesser extent illness perceptions, in explaining adherence has been reported across other chronic conditions (e.g., Broadbent, Donkin, & Stroh, ; Horne et al ., ). The related qualitative studies (Anderson, Walburn, & Morgan, ; Morgan et al, ) identified a range of determinants (e.g., emotional distress, appearance concerns, perceived social support), and we wished to explore whether these associations would be present in a larger representative sample.…”

Section: Introductionmentioning

confidence: 99%

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Psychological correlates of adherence to photoprotection in a rare disease: International survey of people with Xeroderma Pigmentosum

Walburn

Canfield

Norton

et al. 2019

British J Health Psychol

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Objectives Xeroderma pigmentosum (XP) is an extremely rare genetic disorder (approximately 100 known cases in the United Kingdom), where DNA damage caused by ultraviolet radiation in daylight cannot be repaired. Adherence to photoprotection is essential to prevent skin cancer. We investigated psychological correlates of photoprotection in the XP population of Western Europe and the United States. Design Cross‐sectional survey of adults with XP and caregivers of patients <16 years and those with cognitive impairment in the United Kingdom, Germany, the United States, and France (n = 156). Methods Photoprotection activities to protect the face and body when outdoors; avoidance of going outside during daylight hours; intention; self‐efficacy; and social support were assessed using measures developed for this study. Participants answered questions about their illness representations of XP (BIPQ); beliefs about photoprotection (BMQ); automaticity (i.e., without conscious effort) (SRBAI); clinical and demographic characteristics. Ordinal logistic regressions determined factors associated with photoprotection. Results One third did not achieve optimal face photoprotection. After controlling for demographic and clinical factors, modifiable correlates of higher photoprotection included greater perceived control of XP, stronger beliefs in necessity and effectiveness of photoprotection, and higher intention. Avoidance of going outside was associated with greater photoprotection concerns, more serious illness consequences, and higher XP‐related distress. Greater automaticity and higher self‐efficacy were associated with better protection across all outcomes. Conclusions Approximately half of all known cases across three European countries participated. Identified modifiable predictors of photoprotection may be targeted by interventions to reduce the incidence of skin cancers in the immediate future, when a treatment breakthrough is unlikely. What is already known on this subject? Adherence to photoprotection in other populations at elevated risk from skin cancer is poor; however, the level in XP is unknown. Research across chronic conditions shows that adherence to treatment and lifestyle recommendations are influenced by illness perceptions, self‐efficacy, and treatment beliefs. Studies on photoprotection conducted with the general population have found that perceived risk, perceptions of ultraviolet radiation (UVR) protection, self‐efficacy for the behaviour, and automaticity (behaviours that are enacted with little conscious awareness) are related to better photoprotection. What does this study add? This is the first international survey to examine adherence and its correlates in people with XP (an under‐researched group at very high risk of fatal skin cancer). Adherence varies and at least one third have potential for improvement. Perceptions about XP, photoprotection beliefs, self‐efficacy, intention, and automaticity were associated with photoprotection of the face and body when outdoors. Negative emotional re...

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Psychological correlates of adherence to photoprotection in a rare disease: International survey of people with Xeroderma Pigmentosum

Walburn

Canfield

Norton

et al. 2019

British J Health Psychol

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“…Such support conveyed feelings of being cared-for, which was important for many patients in coping with photoprotection behaviours that marked them out as different (Anderson, Walburn, & Morgan, 2017). Such support conveyed feelings of being cared-for, which was important for many patients in coping with photoprotection behaviours that marked them out as different (Anderson, Walburn, & Morgan, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…This study draws attention to the variety of ways support is provided to participants with XP, alongside implications for photoprotection. Such support conveyed feelings of being cared-for, which was important for many patients in coping with photoprotection behaviours that marked them out as different (Anderson, Walburn, & Morgan, 2017). The experience of emotional benefits from ostensibly practical photoprotection support highlights shortcomings of the ubiquitous separation of social support into distinct practical and emotional categories.…”

Section: Discussionmentioning

confidence: 99%

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

Walburn

Anderson

Morgan

2019

British J Health Psychol

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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.

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“…Other research exploring coping and avoidant strategies by those with physical disfigurements includes a study of the experiences of stigma over the lifetime of people with xeroderma pigmentosum 3 (Anderson, Walburn, & Morgan, 2017). The authors find that some participants use clothing, makeup, or specialist camouflage creams to cover skin damage.…”

Section: Managing Stigma: Dress and The Disfigured Bodymentioning

confidence: 99%

Disfigurement, the body and dress: A review of the literature

2018

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This article reviews literature on disfigurement, the body and dress in order to better understand the relationship between dress—including mainstream clothing (“fashion”), clinical clothing (such as pressure garments, prescribed glasses, and prescribed footwear), and accessories—and its social and symbolic status for individuals living with a visible difference. We assess the state of the field through an interdisciplinary lens, collating literature from disciplines including but not limited to Geography, Sociology, Anthropology, Psychology, and Health. We review literature pertaining to living with a disfigurement and managing stigma, with an emphasis on dress and the disfigured body. In bringing this scholarship together, we speak to the geographies of the body and literature on the body and dress, considering the dressed body as both subject in, and object of, dress practice. We suggest that a new substantive focus on disfigurement could help to broaden and invigorate existing fields of inquiry at the intersection of social, health, and cultural geographies. In concluding, we highlight thematic directions for future study, including exploring the spaces and places in which decisions relating to disfigurement and dress are made, and the complex processes of negotiating marginalisation by those with a disfigurement.

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Experiences of stigma over the lifetime of people with xeroderma pigmentosum: A qualitative interview study in the United Kingdom

Cited by 22 publications

References 18 publications

Psychological correlates of adherence to photoprotection in a rare disease: International survey of people with Xeroderma Pigmentosum

Psychological correlates of adherence to photoprotection in a rare disease: International survey of people with Xeroderma Pigmentosum

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

Disfigurement, the body and dress: A review of the literature

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