IDEAS home Printed from https://ideas.repec.org/a/wly/jocnur/v27y2018i9-10p1958-1968.html
   My bibliography  Save this article

“We're stuck with what we've got”: The impact of lipodystrophy on body image

Author

Listed:
  • Claire Adams
  • Anna Stears
  • David Savage
  • Christi Deaton

Abstract

Aims and objectives To evaluate the impact of lipodystrophy on body image and how this affects patients’ daily lives. Background Lipodystrophy refers to a group of rare conditions characterised by generalised or partial lack of body fat and is associated with severe metabolic problems, for example, severe insulin resistance, diabetes and pancreatitis. In addition to its metabolic effect, lack of adipose tissue may have a major impact on appearance and cause distressing physical changes. While global research has focused on diagnosis and management, there is no published work investigating the psychological effects of lipodystrophy on body image. Methods Following ethical approval, participants with lipodystrophy were purposively sampled from the National Severe Insulin Resistance Service in Cambridge, UK, and invited to take part in a semi‐structured interview. Eleven (10 female, one male) interviews were conducted and digitally recorded. Data were analysed using an inductive thematic approach. Results Four main themes were identified in the data set; “Always feeling appearance was different,” “a better understanding of lipodystrophy is needed,” “feeling accepted” and “there's more to lipodystrophy than managing symptoms.” Participants spoke of distressing cosmetic effects related to lack of fat tissue and other changes related to lipodystrophy, contributing to negative body image. For some, negative body image led to feelings of worthlessness impacting daily life and adherence to treatment. Psychological support was lacking but desired by participants. Conclusion Lipodystrophy contributes to negative body image affecting patients’ daily lives. Patients wanted psychological support alongside medical management. Further research is needed to determine how best to deliver psychological support and to evaluate its impact on well‐being and metabolic management. Relevance to clinical practice The effects of rare diseases such as lipodystrophy on appearance can be distressing for patients. Support beyond medical management is needed to improve patients’ daily lives and help them to live well with appearance‐altering conditions.

Suggested Citation

  • Claire Adams & Anna Stears & David Savage & Christi Deaton, 2018. "“We're stuck with what we've got”: The impact of lipodystrophy on body image," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(9-10), pages 1958-1968, May.
  • Handle: RePEc:wly:jocnur:v:27:y:2018:i:9-10:p:1958-1968
    DOI: 10.1111/jocn.14342
    as

    Download full text from publisher

    File URL: https://doi.org/10.1111/jocn.14342
    Download Restriction: no

    File URL: https://libkey.io/10.1111/jocn.14342?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:wly:jocnur:v:27:y:2018:i:9-10:p:1958-1968. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    We have no bibliographic references for this item. You can help adding them by using this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Wiley Content Delivery (email available below). General contact details of provider: https://doi.org/10.1111/(ISSN)1365-2702 .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.