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

Problem

Vitiligo is a progressive, appearance altering condition that can have substantial impact on quality of life. How people access information, make sense of information and seek help for vitiligo is likely to influence how they cope with such impact and whether they seek treatment or adapt to live with the condition. There is relatively little research on people’s experiences of obtaining information about vitiligo and their help-seeking behaviour. We aimed to explore views and experiences of seeking information and help for vitiligo in written accounts of survey respondents.

Approach

We emailed a link to an online survey, with one reminder, to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. This paper reports on free text responses to four open-ended questions about: experiences of seeking information about vitiligo; experiences of seeking treatment for vitiligo; whether they had unmet information needs and; an open question on whether there was anything else they wished to add. The survey dataset was imported into NVivo 10. An inductive thematic analysis was used to explore the data.

Findings

Data were analysed for the 161 people who provided answers to some or all of the survey questions. Free text responses to open-ended questions yielded a total of 495 responses from 159 survey respondents. Many participants wrote extensive free text, often reporting frustration with challenges to help-seeking, particularly perceived lack of awareness of available treatments amongst GPs. Where GPs appeared sympathetic or where signposting towards further information was offered this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was often dismissed by health professionals as ‘cosmetic’, which was upsetting to those who were experiencing substantial impact of the condition. Participants expressed concerns about the credibility of online information and the need for reliable and detailed disease-specific information, as well as a desire for support with managing the psychosocial impacts of vitiligo.

Consequences

Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even amongst members of the Vitiligo Society, who are likely to have received more information than other people with vitiligo. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible online information is important. People with vitiligo would also welcome greater health professional awareness of the possibility of treating vitiligo. Further research is needed to find effective ways to support people living with vitiligo, which could include resources advising on managing social situations and explaining the condition to others, learning camouflage and clear information about the pros and cons of available treatments.