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Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts

Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts
Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts
Objectives Vitiligo is a relatively common autoimmune condition causing loss of skin pigment. Around 1 in 100 people in the UK develop vitiligo. It can have a significant impact on quality of life for many of those affected. How people access information and help for vitiligo may influence how they manage such impact. We aimed to explore people’s views and experiences of seeking health information and help for vitiligo.

Design Qualitative analysis of free-text responses to four open-ended questions in an online survey.

Setting Online survey conducted in the UK between February and March 2016.

Participants
A survey link was emailed to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. One hundred and sixty-one members responded to the survey (24%).

Results Many participants wrote extensive free text, often reporting frustration with help-seeking. They perceived general practitioners (GP) as their primary source of advice but felt that GPs had low awareness of available treatments. Where GPs appeared sympathetic or signposted towards further information this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was dismissed by health professionals including GPs and dermatologists as ‘cosmetic’, which upset those who experienced substantial impact. Participants expressed concerns about the credibility of online information on vitiligo and the need for reliable, detailed information, as well as a desire for support with managing its psychosocial impact.

Conclusions Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even among members of The Vitiligo Society, who are likely to have received more information than others. People with vitiligo would welcome greater health professional awareness of available vitiligo treatments. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible information are also welcomed.
2044-6055
1-8
Teasdale, Emma
f156de5f-e83e-40c0-aafa-0c95dd17aa80
Muller, Ingrid
2569bf42-51bd-40da-bbfd-dd4dbbd62cad
Abdullah Sani, Amirah
91e615c9-0523-4f69-9b0f-b38ff6fed94b
Thomas, kim s
39654459-5700-4a09-9409-a19b14ba7b6b
Stuart, Beth
a51c80d3-5855-4672-b24f-8c65fd2e1444
Santer, Miriam
3ce7e832-31eb-4d27-9876-3a1cd7f381dc
Teasdale, Emma
f156de5f-e83e-40c0-aafa-0c95dd17aa80
Muller, Ingrid
2569bf42-51bd-40da-bbfd-dd4dbbd62cad
Abdullah Sani, Amirah
91e615c9-0523-4f69-9b0f-b38ff6fed94b
Thomas, kim s
39654459-5700-4a09-9409-a19b14ba7b6b
Stuart, Beth
a51c80d3-5855-4672-b24f-8c65fd2e1444
Santer, Miriam
3ce7e832-31eb-4d27-9876-3a1cd7f381dc

Teasdale, Emma, Muller, Ingrid, Abdullah Sani, Amirah, Thomas, kim s, Stuart, Beth and Santer, Miriam (2018) Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts. BMJ Open, 8 (1), 1-8. (doi:10.1136/bmjopen-2017-018652).

Record type: Article

Abstract

Objectives Vitiligo is a relatively common autoimmune condition causing loss of skin pigment. Around 1 in 100 people in the UK develop vitiligo. It can have a significant impact on quality of life for many of those affected. How people access information and help for vitiligo may influence how they manage such impact. We aimed to explore people’s views and experiences of seeking health information and help for vitiligo.

Design Qualitative analysis of free-text responses to four open-ended questions in an online survey.

Setting Online survey conducted in the UK between February and March 2016.

Participants
A survey link was emailed to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. One hundred and sixty-one members responded to the survey (24%).

Results Many participants wrote extensive free text, often reporting frustration with help-seeking. They perceived general practitioners (GP) as their primary source of advice but felt that GPs had low awareness of available treatments. Where GPs appeared sympathetic or signposted towards further information this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was dismissed by health professionals including GPs and dermatologists as ‘cosmetic’, which upset those who experienced substantial impact. Participants expressed concerns about the credibility of online information on vitiligo and the need for reliable, detailed information, as well as a desire for support with managing its psychosocial impact.

Conclusions Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even among members of The Vitiligo Society, who are likely to have received more information than others. People with vitiligo would welcome greater health professional awareness of available vitiligo treatments. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible information are also welcomed.

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More information

Accepted/In Press date: 8 December 2017
e-pub ahead of print date: 11 January 2018
Published date: January 2018

Identifiers

Local EPrints ID: 417167
URI: http://eprints.soton.ac.uk/id/eprint/417167
ISSN: 2044-6055
PURE UUID: 69c40af8-5ebe-4612-bc6b-0e047fec549e
ORCID for Miriam Santer: ORCID iD orcid.org/0000-0001-7264-5260

Catalogue record

Date deposited: 23 Jan 2018 17:30
Last modified: 17 Dec 2019 01:42

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