Social Difficulty and Appearance Concerns in Lymphoedema Secondary to Cancer

Project Summary

This research question focuses on "what is the nature and extent of distress experienced in terms of social anxiety, avoidance and isolation following cancer related lymphoedema?"

Using semi-structured interviews, focus group interviews and a postal survey, the research aims to:

1. Identify the nature of social difficulty, avoidance and reaction to visible difference in people with secondary lymphoedema as a a result of cancer and its treatments

2. Explore the extent to which questionnaires used in other contexts capture social difficulty, avoidance and reaction to visible difference in people with secondary lymphoedema

3. Identify the questionnaires most acceptable with secondary lymphoedema

4. Survey a large group of people with secondary lymphoedema with regard to their experiences of social difficulty, avoidance and reaction to visible difference

Start Date and Duration

October 2009 - January 2011

Funder

Macmillan Cancer Support

Grant Amount

Academics Involved

Professor Rob Newell, Dr Vanessa Taylor, Dr Anita Sargeant

External Partners Involved

Dr Jacquelyne Todd, Professor Rachel Dixey, Ms Sarah Carney

Expected Outcomes Involved

Physical therapies are commonly available for the treatment of the physical and functional effects of lymphoedema. However, there is little research into the sorts of problems associated with social anxiety, avoidance and isolation. This study will provide a unique insight and contribute to the development of evidence based guidance that can be made available to service users with secondary lymphoedema around the UK.