Patient’s experience of managing cancer related lymphoedema
Research type
Research Study
Full title
Managing cancer related lymphoedema: Patients experience and evaluation of service provision.
IRAS ID
130948
Contact name
Paula Smith
Contact email
Research summary
Lymphoedema is the result of a build-up of fluid in the soft body tissues (usually the arm or leg) when the lymph system is damaged or blocked, often as the result of cancer or cancer treatment. Lymphoedema is not curable, but it can have a significant impact on an individual’s day to day life. Current treatment therefore aims to minimise shape and tissue distortion, and reduce the functional and psychological impact on those affected. Individual self-management comprising the four cornerstones of care; skin-care, guided exercises, using a compression garment and employing Simple Lymphatic Drainage (SLD), is the mainstay of treatment. The International Best Practice Guidelines (2006) gives indicators of which treatments may be appropriate for different levels of severity; however, the standards recognise that the strength of evidence and consistency of approach in lymphoedema management is still in its infancy. The Hertfordshire Community Trust Lymphoedema service works according to these guidelines and wish to ensure that their practice is meeting the holistic needs of people affected by lymphoedema by listening to their stories. Hearing the ‘patient perspective’ helps clinicians understand patient experience and facilitates the shaping of care. This serves to better accommodate these needs when structuring services for the future, which is an expressed priority for user involvement on a local and national level. The overall aim of this study is therefore to explore the patient’s experience, needs and expectations of managing cancer related lymphoedema, and the impact of service delivery and support on this approach. Eight to twelve current patients will be invited to participate in a semi-structured interview lasting 30-60 minutes. Interviews will be analysed for common themes and issues. It is anticipated that the findings will be used to develop future treatment practice and service provision within the Hertfordshire Community Trust Lymphoedema service..
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
13/WM/0222
Date of REC Opinion
31 May 2013
REC opinion
Favourable Opinion