Lymphedema is a really tough diagnosis to receive and compression is not an easy treatment to cope with. Compliance is a challenge and for good reason. In the Mauritian setting with temperatures above 30 deg Celsius most the year and humidity above 70% for 7 months of the year, wearing compression 24/7 is even harder.
But there are many other reasons why a patient could battle with wearing their compression and the therapist has to take all these factors into account before prescribing compression. And we need to follow up with patients and adapt treatment if needed. Here are some concerns I hear from my patients and ideas on how to get around the problem:
- Physical inability to get the compression on: this can be due to age or illness. The best time to address this problem is before treatment begins. Ask about home life and who they live with? If they live alone, do they have a neighbour, family member or friend next door who could pop over daily. Do they have a cleaner who could be trained to bandage before they leave work each day etc etc. In the event (and it does happen) that someone who needs help really has nobody to call on, then treatment has to be adjusted to accommodate that, even if it means poorer treatment outcomes. An example: I have a patient aged 72 who lives on her own and does not wish to ask for outside help. She is unable to bandage herself and does not have the strength in her fingers to pull a compression sleeve and glove on. Being self sufficient is important to her. Our best solution was to order her a Juzo Velcro Adjustable Compression System (ACS) which she can put on by herself and wear 22 hours daily. Occasionally she is able to pop in to the treatment rooms for a bandage, which I apply and she keeps on for 3 days as a mini intensive decongestion treatment. We don’t have top reductions but we have softer skin, no more bouts cellulitis and a patient with a sense of control over her condition.
- Financial Restraints: Compression is partially covered by private and/or public healthcare systems in some countries but read the lymphedema blogs and its evident that the costs of treating lymphedema add up and around the world patients are having to compromise on care because they cannot pay for what they need. In Mauritius, to date, there is no policy in place regarding reimbursement of treatment and garment costs. And there is no government funding at all and we have one NGO (Link to Life) covering the full scope of treatment. I spend a lot of time planning treatment according to what the patient can afford at the time and what they can budget for in the future. Bandages are the cheapest option, so I focus on giving them the best bandage skills possible. Over time I have found that a flat knit garment is a better investment for patients with lymphedema. It costs more at the outset but its more durable and more effective. Patients should be given an idea of when their garment needs to be replaced and they can then set aside a small amount of money monthly so that in 8-10 months time they have enough to order a second armsleeve or stocking.
- The patient is not ready for treatment: this might sound silly but there is a lot of psychology that goes towards being ready to deal with a chronic condition. Sometimes the patients family are pushing them towards treatment, sometimes the patient, through trauma over the condition, has disassociated from their illness in order to cope. Sometimes, after many years of incorrect diagnosis and failed attempts at treatment, the patient no longer believes that improvement is possible. This concept of patient readiness (The Stages of Change) is outlined beautifully by Andrea Brennan (OTD OTR/L CLT-LANA CI-CS WCC) in her case study presentation that you can view here:
https://www.youtube.com/watch?v=sECPBTP8qdk&fbclid=IwAR1BO79j-2Q5qxrq1-Zkeemhx3_gXV9sE6MhO7lP7jCybKS9cX4LXA9ZvJg Patient assessment in terms of readiness to receive treatment is vital. The stages of change below as summarised below. Timing is everything!
The Stages of Change
- The Precontemplation Stage: the patient knows they have a problem but they are not yet sure of how to approach solving it, they are fearful and need more information and time. This is not a good time to jump straight into CDT intensive.
- The Contemplation Stage: the patient understands the treatment and starts to make plans and set up their life in order to go into treatment.
- The Preparation Stage: this is a commitment stage of booking appointments, organising a family member to accompany them and prepping life so that they can start treatment.
- The Action Stage: the patient is interested, invested and physically present and motivated to be a part of their treatment.
- The Maintenance Stage: where the patient feels skilled and confident enough to carry on treatment at home. They believe in the treatment and their ability to cope.
4. Patients Do Not Want to Be Seen In Compression: this is a very valid problem and one I hear a lot. Patients tire quickly of people staring and asking them what is wrong with them. They want their health privacy back and they don’t want to draw stares and attention to their condition and most of all they don’t want to explain their illness to a stranger. I try to highlight how wonderful it is if they can educate and spread awareness but it really is a personality thing and one we have to respect. One patient with a great sense of humour suggested getting a t-shirt that says ”I’ve got lymphedema…google it”.