Working through the pain… and getting on with it — some patients’ experiences of living with Lupus-related foot problems

Williams, AE; Blake, A; Cherry, L; Alcacer- Pitarch4, B; Edwards, CJ; Hopkinson, N; Vital, EM; Teh, LS

Abstract

Background: Along with its skin manifestations, SLE can present with
a variety of musculoskeletal signs and symptoms and vascular
problems that can affect the feet. Furthermore, there is the potential
for reduced tissue viability, leading to thinning of the skin and/or callus
formation. Further, systemic resistance to viral, bacterial and fungal
infections may be reduced and, together with poor tissue viability,
create the opportunity for these infections to proliferate in the feet. A
recent survey by the same authors (unpublished) has shown a high
prevalence of these infections, with many experiencing the impact of
vascular and musculoskeletal problems. To date there is no research
that has explored the impact of foot problems on people’s lives.
Methods: Following ethical approval, 12 participants who fulfilled the
inclusion criteria were recruited: diagnosed with SLE (ACR diagnosis),
current and/or past experience of foot/lower limb problems and age
�18 years. Consent was obtained and then conversational-style
interviews were carried out with an interpretivistic phenomenological
approach. The interviews were digitally recorded and complemented
by field notes. An opening question was used for all participants: ‘Tell
me about your experiences of having foot problems?’ If necessary,
further trigger questions were used in order to maintain the conversation
and the focus on foot problems. Data were transcribed verbatim
and analysed using a thematic framework approach. The transcripts
were verified by the participants and were analysed by a second
researcher in order to add to the credibility of the analyses.
Results: The data was organized into seven themes: Foot problems
and symptoms—what they are and the feeling associated with them;
Experiences of foot problems being diagnosed; Impact of foot
problems on activities; Treatment of foot symptoms/problems;
Perceived obstacles to professional foot care; Unanswered questions
about feet and foot care; and Recognition of the need for professional
foot care and foot care advice. These people experienced a wide
variety of foot problems that impact significantly on activities. Some
reported working through the pain in order to achieve visible normality
while experiencing the negative emotions of anger, frustration and
anxiety. Although some had experienced professional foot care, there
were obstacles to the foot problems being diagnosed, resulting in
many unanswered questions and some inappropriate selfmanagement.
Conclusion: Despite reporting foot pain, negative emotions and
activity restrictions related to their foot symptoms, people with SLE
tend to get on with it and self-treat rather than seeking professional
foot care. The lack of focus on the feet in the medical consultation is
caused by the participants’ belief that it is not the consultant’s role.
There is a clear need for foot assessments to be included in the
medical consultation and for professional foot care to be provided.

Citation

Williams, A., Blake, A., Cherry, L., Alcacer- Pitarch4, B., Edwards, C., Hopkinson, N., …Teh, L. (2016). Working through the pain… and getting on with it — some patients’ experiences of living with Lupus-related foot problems. Rheumatology, 55(Supp.1), i109. https://doi.org/10.1093/rheumatology/kew129.008

• Journal Article Type: Article
• Publication Date: Apr 27, 2016
• Deposit Date: Jul 26, 2016
• Publicly Available Date: Jul 26, 2016
• Journal: Rheumatology
• Print ISSN: 1462-0324
• Electronic ISSN: 1462-0332
• Publisher: Oxford University Press
• Volume: 55
• Issue: Supp.1
• Pages: i109
• DOI: https://doi.org/10.1093/rheumatology/kew129.008
• Publisher URL: http://dx.doi.org/10.1093/rheumatology/kew129.008
• Related Public URLs: http://rheumatology.oxfordjournals.org/