lymphoedema I hear many stories of lack of compliance and concordance from health professionals regarding their patients, or of frustration when faced with ...
Lymphoedema management: enhancing patient learning through education
W
orking within the field of lymphoedema I hear many stories of lack of compliance and concordance from health professionals regarding their patients, or of frustration when faced with patients who cannot take control of their condition and move forward. A recent in-house survey regarding the ‘reasons why nurses lose their passion’, carried out among therapists attending training by the Lymphoedema Training Academy, cited one of the reasons as ‘uncompliant patients’. Running a training academy it is easy to reflect on the evaluation of thousands of students and what their learning experience gives them along with the transfer of knowledge. We can improve peoples’ lives enormously if we just take a moment to ensure that learning has taken place. With the correct training and education, learning can equip the individual to move forward and take control of their life or their conditions. The theory of education has changed over the years, moving away from lecturetype sessions and the approach of ‘filling an empty vessel’ to one focused on more student involvement, with more emphasis on ‘active’ participation in education. Likewise, patient activation is described as the knowledge, skills and confidence required to manage health, particularly a lifelong condition (Hibbard and Gilburt, 2014). Lymphoedema is a chronic swelling of the tissues caused by lymphatic failure. It can have many different causes but is always due to a final failure of the lymphatic system, resulting in localised oedema, usually in a limb. The psychosocial consequences are huge, often leading the patient to depression, denial and reported ‘non-concordance’. The same can be true of lipoedema, which is often confused with lymphoedema and is actually an abnormal laying down of fat distribution in the limbs’ (Fetzer and Fetzer, 16
2015). Its appearance is different from that of lymphoedema, classically having fat deposited from the ankle to the waist with tender, easily bruised tissues and longer-term involvement of lymphoedema. Having being involved in lymphoedema management for several decades and lymphoedema education at differing levels, my passion is finding a way to cement the learning and provide ways to transmit that knowledge to the patient and other health professionals. Within the training academy we look seriously at the consequences of failing to assist the patient with their ability to self-manage their condition. Often it is the physical appearance of the lymphoedema and lipoedema that gains recognition and the emotional impact is not considered. To put it into context, I have encountered patients who took their lives by suicide (which was thought to be a consequence of their oedema and coping mechanism), and this has also been the experience of students who have attended training. The psychosocial impact of lymphoedema is well documented (Mason et al, 2008) but it is the time required to seriously assist the patient that is often limiting. Lymphoedema training requires the acquisition of some complex and very practical skills, which need to be applied in the real world and transferred to the patients. It is the time required to absorb the information, the practice and demonstration of the skills required, and repeating of this at follow-up appointments that can assist with long-term improvements in self-management. The National Institute for Health and Care Excellence (2012) particularly stated that we must understand patients as individuals and provide all the support necessary for them to maintain their independence. Within the academy we discuss how the patient and the student learn. We briefly
discuss learning styles and how being Activists, Reflectors, Theorists and Pragmatists could influence patients’ absorption of education (Honey and Mumford, 1986). Within the field of adult education we cover all styles of learning, but I believe that sometimes this is not appreciated when transferring information to patients. How we learn affects our enthusiasm for the subject in the moment, it affects our ability to absorb the knowledge being transferred and embedded. When we repeat a skill often enough, the compound effect of it becomes second nature, intuitive, easy to recall. We do this with many everyday tasks as we grow and develop and the same is true of our practical skills, developing from novice to expert (Benner, 1982). The same is true for the patient. For example, they become more proficient at garment application the more times they apply them. However, how much do we really consider the application of learning when educating our patients and what stands in the way? Arndt and Underwood (1990) highlighted this by discussing that it is important that the learning style of the patient is considered when educating them. Perhaps considering the patient’s preferred type of learning will improve the transfer of knowledge and the involvement can empower the patient to improve their outcomes and regain control of their condition. Working in the field of lymphology means that we are involved with a group of patients who may have been born with a lymphatic abnormality or those who may have acquired it through a secondary cause. Either way, this group of patients have a lifelong condition that requires commitment, control and drive to address its daily impact. When we examine patient involvement, I believe that we need the same assessment and consideration that is applied to general education, understanding that to master a daily and lifetime skill will take longer for British Journal of Nursing, 2017, Vol 26, No 4
© 2017 MA Healthcare Ltd
Jane Wigg, Director, Lymphoedema Training Academy and LymphVision; Clinical Consultant, Haddenham Healthcare; and Non-executive Director, LymphCare UK
© 2017 MA Healthcare Ltd
CLINICAL FOCUS
some patients than others. We know that the pressure of a rigid environment and clinic regime does not allow for the flexibility of the patient learner and leads to a lack of ability in self-help. We are aware of the time constraints within the NHS and the variation in length of appointment time. Maybe if appropriate consideration was given to the patient, an increase in successful self-care would be achieved. I have previously discussed the importance of self-management (Wigg, 2012) and, with lymphoedema and lipoedema, the patient needs to become proficient in the skills needed to manage their long-term condition. Mainly the role of the patient is to have a good understanding of the cause of the oedema, to prevent infection or progression and to carry out the practical skills associated with their care, such as applying compression in the form of garments, wraps or bandages and selflymphatic drainage. In context, within our lymphoedema training programme, over a 135-hour complete course, the therapist will apply multi-layer bandaging a minimum of 6 times in addition to their examination and home-based practice. In addition, they will practise lymphatic drainage on each other in excess of 10 sessions in addition to home and post-lesson practice. This is on top of the fact they attend the training with a background of healthcare skills developed over many years.Yet we expect a patient or relative to master self-bandaging application in one clinic session and wonder that they cannot comply and complain of the garments being uncomfortable or the bandages digging in. In addition, we may not have considered the patients’ learning styles or ability to comprehend an often complex skill, and provide little supporting literature. The same is true of all skills demonstrated to patients with lymphoedema or lipoedema, including manual lymphatic drainage. Within our training, the diagnostic tool of near-infrared fluoroscopy is used, which has demonstrated enhanced hand movement to move lymphatic fluid (Belgrado et al, 2016). The new understanding of anatomy and drainage pathways is more complex. However, the transferring of any knowledge of lymphatic drainage to patients is carried out over a short consultation where the patient is often expected to become an ‘expert’ following a one-off short teaching session— whereas we know it takes the therapist hours British Journal of Nursing, 2017, Vol 26, No 4
of practice to become proficient. We have many therapists stating that patients do not carry out their technique correctly, making it inefficient or that they ‘just can’t do it’. The easier and more straightforward education relating to self-care is, the better the compliance. The training academy has trained many therapists with learning problems or with conditions such as dyspraxia and these should also be considered in our patient group. My suggestion would be that the appropriate time is taken to cement patient learning, ensuring that they are competent and have a good understanding backed by appropriate literature to assist with any skill, exactly the same as the general student.
Within the field of adult education, we cover all styles of learning, but I believe that sometimes this is not appreciated when transferring information to the patients. Within the training academy we use a supervised self-management philosophy whereby the patient will be supervised and provided with all the knowledge and skills necessary to gain the confidence required for the patient to manage their health situation. Once gained, the support will continue with the plan for the patient to become totally empowered and self-caring. With this method, it is not necessary for all patients to be kept ‘on the books’, as has been seen over many decades. Where compression is concerned many clinics still provide a ‘standard’ garment but if treatment previously failed, often the patient requires stronger, more robust or doublelayering of garments (Wigg, 2009). With the correct coaching and education, they can appreciate this and outcomes are maintained and quality of life improves. Other tips used in training are role play and the transfer of knowledge. If you ask your patient to ‘properly’ demonstrate how they carry out their simple lymphatic drainage, and critique and improve it, you will have better outcomes. Setting up patient
educational groups also helps—bringing together like-minded patients who are keen to tackle their treatment. Groups of people bring energy, positivity and peer support. Making time to develop this interactive training for your patients could influence their overall health improvements in addition to mental health and support systems and prove to be cost-effective within a clinic setting. An important aspect is to simply ask why patients are finding it difficult to comply— what solutions can we provide to help them? This can be anything from practical solutions to time and training. In summary, there is a lot of literature available for the patient with lymphoedema and lipoedema (such as that provided by the Lymphoedema Support Network, Lipoedema UK, LipoedemaLadies) should they wish to purchase it. Within the hospital/ clinic setting it is more likely that clinic time commitments limit the learning experience for the patients, meaning that their understanding is less, along with less chance to practise a skilled technique, lowering confidence and having a compound effect on the perceived ‘non-concordance’. In the words of Nelson Mandela: ‘Education is the most powerful lesson that we can use to change the world.’ BJN
Arndt MJ, Underwood B (1990) Learning style theory and patient education. J Contin Educ Nurs 21(1): 28-31 Belgrado JP,Vandermeeren L,Vankerckhove S et al (2016) Near-infrared fluorescence lymphatic imaging to reconsider occlusion pressure of superficial lymphatic collectors in upper extremities of healthy volunteers. Lymphat Res Biol 14(2): 70–7. https://dx.doi. org/10.1089/lrb.2015.0040 Benner P (1982) From novice to expert. Am J Nurs 82(3): 402-7 Fetzer A, Fetzer S (2015) Early lipoedema diagnosis and the RCGP e-learning course. Br J Community Nurs 20(suppl 4): S22–8. https://dx.doi.org/10.12968/ bjcn.2015.20.Sup4.S22. Hibbard J, Gilburt H (2014) Supporting People to Manage Their Health: An Introduction to Patient Activation. The King’s Fund, London Honey P, Mumford A (1986) The Manual of Learning Styles. P Honey, Maidenhead Mason VL, Upton D, White R (2008) The psychosocial impact of primary lymphoedema. Journal of Lymphoedema 3(2): 50–6 National Institute for Health and Care Excellence (2012) Patient experience in adult NHS services: improving the experience of care for people using adult and NHS services. Clinical guideline 138. http://tinyurl.com/ j7w2njl (accessed 25 January 2017) Wigg J (2012) Supervised self-management of lower limb swelling using FarrowWrap. British J Community Nurs 17(4): S22-29. https://dx.doi.org/10.12968/ bjcn.2012.17.Sup4.S22 Wigg J (2009) A case for specialist practice. Journal of Lymphoedema 4(1): 72-8
17
