Social
Difficulty
and
Appearance
Lymphoedema Secondary to Cancer
Concerns
in
Jacquelyne Todd, University of Bradford
Email : Jacquelyne.Todd@leedsth.nhs.uk
Summary
This study was funded by the User-Led Grants scheme. It examined the social
consequences of Secondary Lymphoedema (SL) among people who develop the condition
as a result of cancer and its treatments.
Background
Information for this study was gathered through interviews, focus groups and a postal
questionnaire. A total of 120 participants were included. Interviews were conducted with 20
people with lymphoedema (in the upper and lower limb) who identified themselves as
experiencing difficulties with social interaction. Focus groups were held with 20 people with
lymphoedema who are not experiencing social anxiety – their views were sought on what the
general relevance of these concerns might be among people with SL. Postal questionnaires
were sent to 80 people with SL to get a clearer indication of the extent and nature of social
difficulties within this group.
Some of the specific aims of the study are:
1. To identify the nature of social difficulty, avoidance and reaction to visible difference in
people with SL as a result of cancer and its treatment
2. To explore the extent to which questionnaires validated in other contexts capture social
anxiety, avoidance and isolation and reaction to visible difference in people with SL
3. To identify measures to capture this information that would be most appropriate to
people with SL
Findings
People feel self-conscious about the change in the appearance of their bodies, and
lymphoedema can affect patients’ families and friends, creating difficulties for intimate and
social relationships, through loss of independence and reliance on others, resulting in
feelings of burdening family and friends. Information about lymphoedema is often not
available and people are frequently unaware of the risk of developing it. Furthermore, health
care professionals are insufficiently knowledgeable about the condition. People experienced
difficulties getting treatment, particularly to help them deal with the psychological impact of
the condition, because it is difficult to find appropriate services or because services are not
widely available. There is a lack of funding for treatment such as manual lymphatic drainage
(participants often paid for this themselves). There is unmet need for interventions to
address social interaction and body image concerns in lymphoedema. Clinicians need to do
more to identify those at risk of or having these issues.
Why is this work important?
Lymphoedema is a disfiguring swelling for which there is no curative treatment. Secondary
Lymphoedema is a common complication following cancer or its treatment: around 20% of
breast cancer patients and between 28 and 47% of patients after gynaecological surgery
develop arm swelling. A recent survey of people affected by cancer found that 28% had
problems with body image and self-consciousness. Yet while therapies are available for
treatment of the physical effects of lymphoedema there is little information about the social
and emotional impact of SL on cancer survivors. A recent guidance note recommended the
need for psychosocial support however further information is needed on the type of social
difficulties experienced by cancer patients with SL.
The overall purpose of this study was to gather more information about the nature and extent
of social difficulties experienced by people with SL in order to establish what the most
appropriate types of interventions might be and how these interventions might be made
available.