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Clinical Perspectives

Managing the psychosocial aspects of lymphedema Using cognitive behavioural therapy skills towards better self-care

Successful care of lymphedema is good self-management. This research suggests that subtle changes in behaviour and lifestyle of patients could revolutionize a patient’s perspective on living with lymphedema. By Jane Durston


ome people with lymphedema experience complex psychosocial issues, which have the potential to impact a patient’s overall well-being, as well as their adherence to the treatment regimen. Given that the key to successful management of lymphedema is good self-management, this may require changes in behaviour and lifestyle. To facilitate these changes, some cognitive restructuring may be beneficial.

It’s important that healthcare professionals appreciate the genuine frustrations that occur for some people with lymphedema.

Photos: CanStockPhoto

The National Health Service (NHS) and the National Institute for Health and Care Excellence recommends Cognitive Behavioural Therapy (CBT) as useful for people with long-term conditions.   The UK’s Lymphoedema Support Network (LSN) estimates lymphedema affects at

least 240,000 men, women and children in the UK, many of whom remain undiagnosed and untreated. Garry Cooper of the British Lymphology Society (BLS) notes, “England has yet to address the inequity in both policy and service provision. Until this is resolved, patients will continue to be misdiagnosed and mismanaged with all the resultant complications.” This is a global challenge that many countries, including Canada, face. The BLS’s, “Standards for Lymphoedema Care,” (2014) states the British GP Consortia and NHS Commissioning Boards should, “develop services in line with the long term nature of the condition such as the provision of psychological, physiotherapy and occupational services.”  It’s important that healthcare professionals (HCP) appreciate the genuine frustrations that occur for some people with lymphedema. They may not fully understand their condition, and sometimes find their general practitioner doesn’t, either. Instead, they may have been given a variety of mixed and indeed punitive, guilt-laden messages, e.g. you’re overweight, you have a swollen limb; you have to live with it, there’s nothing

Jane Durston is Operations Manager for the British Lymphology Society. She graduated from the University of Bath Spa with a Postgraduate Diploma in Counselling Psychotherapy in 2012, and from the University of Gloucestershire with a MA (with distinction) in Critical & Creative Writing in 2013.

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that can be done. One patient reported being told, “it’s a small price to pay for surviving cancer – think yourself lucky.”     What kind of experiences do people with lymphedema report?   Ridner (2009:1) highlights a variety of recurrent themes in her research, “lack of treatment resources, lack of lymphedema research, pleas for research to be undertaken to study their conditions, a willingness to participate in research, deep anger that healthcare professionals seemingly either do not care or fail to understand the seriousness of their problems.”   Boxall & Taplin (2010:13) state, “75.5% of patients demonstrated a need for psychosocial occupational therapy input.”    Bulley (2007:29) reports, “several individuals found adjusting to living with this chronic disorder traumatic and felt the need for support.” They described anger and difficulties in accepting the impact of lymphedema on their lives. One service provider supported this, explaining that many patients need to go through, “a Fa l l 2 0 1 4

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Pathways Fall 2014  
Pathways Fall 2014