Literature DB >> 28810476

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

Rebecca Anderson1, Jessica Walburn1, Myfanwy Morgan1.   

Abstract

This study explored experiences of stigma in 25 adults with xeroderma pigmentosum. Analysis of semi-structured interviews revealed the changing nature of stigma over the lifetime. Bullying occurred in childhood, whereas adults were questioned about both their photoprotection and skin damage, often resulting in internalised feelings of stigma. Resilience and rejection of feelings of stigma increased with age and experiences of stigma differed across cultures. Findings indicate a need to develop social skills training to help people reject feelings of stigma. Future research should explore perspectives of families, friends and formal institutions and their potential to cause or reduce feelings of stigma.

Entities:  

Keywords:  adjustment; appearance; chronic illness; dermatology; stigma

Mesh:

Year:  2017        PMID: 28810476     DOI: 10.1177/1359105317714643

Source DB:  PubMed          Journal:  J Health Psychol        ISSN: 1359-1053


  8 in total

Review 1.  Xeroderma pigmentosum: an updated review.

Authors:  Alexander Kc Leung; Benjamin Barankin; Joseph M Lam; Kin Fon Leong; Kam Lun Hon
Journal:  Drugs Context       Date:  2022-04-25

2.  Challenges and proposed solutions for formative research to inform systematic intervention development in rare and unstudied conditions: The case example of Xeroderma Pigmentosum.

Authors:  Kirby Sainsbury; Jessica Walburn; Vera Araujo-Soares; John Weinman
Journal:  Br J Health Psychol       Date:  2017-12-19

3.  Evaluation of a personalised adherence intervention to improve photoprotection in adults with Xeroderma Pigmentosum (XP): protocol for the trial of XPAND.

Authors:  Jessica Walburn; Sam Norton; Robert Sarkany; Kirby Sainsbury; Vera Araújo-Soares; Myfanwy Morgan; Martha Canfield; Lesley Foster; Jakob Heydenreich; Paul McCrone; Adrian Mander; Falko F Sniehotta; Hans Christian Wulf; John Weinman
Journal:  BMJ Open       Date:  2019-07-17       Impact factor: 2.692

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

Authors:  Jessica Walburn; Martha Canfield; Sam Norton; Kirby Sainsbury; Vera Araújo-Soares; Lesley Foster; Mark Berneburg; Alain Sarasin; Natalie Morrison-Bowen; Falko F Sniehotta; Robert Sarkany; John Weinman
Journal:  Br J Health Psychol       Date:  2019-06-10

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

Authors:  Myfanwy Morgan; Rebecca Anderson; Jessica Walburn; John Weinman; Robert Sarkany
Journal:  BMJ Open       Date:  2019-02-19       Impact factor: 2.692

6.  Why? What? How? Using an Intervention Mapping approach to develop a personalised intervention to improve adherence to photoprotection in patients with Xeroderma Pigmentosum.

Authors:  Jessica Walburn; Kirby Sainsbury; Lesley Foster; John Weinman; Myfanwy Morgan; Sam Norton; Martha Canfield; Paul Chadwick; Bob Sarkany; Vera Araújo-Soares
Journal:  Health Psychol Behav Med       Date:  2020-10-27

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

Authors:  Jessica Walburn; Rebecca Anderson; Myfanwy Morgan
Journal:  Br J Health Psychol       Date:  2019-11-22

8.  Improving photoprotection in adults with xeroderma pigmentosum: personalisation and tailoring in the 'XPAND' intervention.

Authors:  Kirby Sainsbury; Jessica Walburn; Lesley Foster; Myfanwy Morgan; Robert Sarkany; John Weinman; Vera Araujo-Soares
Journal:  Health Psychol Behav Med       Date:  2020-11-07
  8 in total

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