In life we can determine what choices we make, from the way in which we dress and appear, to what we choose to say, or not to say. However, there are things we cannot choose, which may be due to genetics, such as biological sex, or the ageing process, and these may put some at more risk of developing certain conditions (Cooper-Stanton, 2020a). When choices are forced on a person, such as the development of a long-term condition (LTC), the impact of this goes beyond the physical presentation (Cooper-Stanton, 2019). Lymphoedema, as a category within the umbrella term of chronic oedema, is an LTC that leads to the development of oedema in any part of the body, with some related to specific events in someone's life (Rankin, 2016). For example, secondary lymphoedema is related to breast cancer and its treatment. These are the choices that someone did not intend to make.
This leads to the next part of lymphoedema as an LTC and the forming of new relationships. These relationships are not the ones you envisage, such as with people or groups, but the relationships formed internally. This new identity must connect with other things included with this LTC. For example, meticulous skin care, exercise, simple lymphatic drainage and the mainstay of management, which is compression therapy (International Lymphoedema Framework (ILF), 2006). Like a sales pitch, the person with lymphoedema will hear and read that compression therapy is the most effective mechanism for treating and managing their condition. This is accurate compared with other approaches at the present time.
Compression therapy involves an array of strategies: compression bandaging, compression hosiery, and adjustable compression devices (using hook-and-loop fastenings), which are available in a variety of designs, colours and compression levels for the arm and leg (Cooper-Stanton, 2020a). The consensus documents, ‘Compression Therapy: A position document on compression bandaging’ and ‘Best Practice for the Management of Lymphoedema’ draw together the collective expert opinion that compression therapy is effective (ILF, 2006; 2012). Equally, systematic reviews have also indicated its effectiveness, leading clinicians to trumpet its success and relevance (Moseley et al, 2007; Oremus et al, 2012; Haesler, 2016). Despite the positive benefits, there are still questions around the quality and strength of the evidence in published studies. The objective claims surrounding compression therapy's effectiveness are ones I would support and concur with, based on my own clinical experience. Yet there are those patients who have disengaged, or have never adhered to what has been prescribed for their LTC (Clouston et al, 2017).
‘What is the difference between those who are reluctant and those who are accepting of their LTC in their lives?
This is despite the clinician's efforts to explain in multiple ways (verbal and written) the benefits, or to even signpost them to peer-led resources and services. Perhaps what we are missing is something that we cannot see: the relationship that is forming between that person and compression therapy—what it means to them in their life, but also how they perceive themselves when they ‘don’ or ‘doff’ their garment, even if it is colourful and attractive to someone else's mind.
In my previous article, ‘Men with lymphoedema: how can services be made more inclusive?’ I wrote about the potential for gender to be a factor in the care of patients with lymphoedema (Cooper-Stanton, 2020b). Gender represents one type of relationship in a person's life, from how they perceive their own masculinity and femininity, and when this alters due to the presence of lymphoedema (Cooper-Stanton, 2020b). Research suggests the reasons why someone may not want compression therapy could be limited knowledge, its appearance, the time-consuming nature of application and removal, or the reaction of others (Alcorso et al, 2016; Probst et al, 2019). These all add to why someone may not perceive compression therapy as a lottery win, but as an unwanted guest that is staying indefinitely.
Not every person with lymphoedema perceives compression therapy as a negative, some see it as something that enables them to live and fulfil their lives. The question is, what is the difference between those who are reluctant and those who are accepting of their LTC in their lives? Research offers further insight into this area, with some suggesting an individual's positive approach can help them to weather the storms in their lives (Small et al, 2013). Alternatively, others suggested that educational attainment, such as qualifications, can have a positive influence in supporting a person's ability to understand their role in managing their LTC (Clouston et al, 2017). This is combined with the level of support that a person receives from significant others, and by different agencies, such as the NHS or charities (Clouston et al, 2017; World Health Organization, 2020). These combine to form what some people describe as ‘health literacy’—a person's ability to understand their condition, manage it with confidence and knowledge, either alone or through the support of others (Panagioti et al, 2018).
However, the other question is: how do we help and support our patients to reach health literacy? Some patients may never reach that destination, and we must respect the choices that the person makes. However, we must also attempt to engage with ‘patient activation’, which offers tools, such as coaching, to support the person to understand their choices and the strengths they have already in managing their LTC, such as compression therapy and its role in their condition (NHS England, 2019). Essentially, the focus is on empowering the person to make decisions that they consider are in their best interests, either to wear or not to wear their particular form of compression therapy. The route to compression therapy is not linear, but rather one that is filled with twists and turns, with some dead ends. To support a person to engage with compression therapy, we must employ all the skills that we possess, such as communication and coaching, or employ the skills of others, such as psychologists. The clinician plays a pivotal role in this new relationship with lymphoedema and compression therapy. They bring together their own experiences and knowledge, to support the person living with lymphoedema, and apply the principles of evidence-based practice through best available evidence, clinical judgement and patient involvement (Johnson, 2008). In this instance the most important component is not the compression therapy, but the patient and the relationship they develop with their own self when confronted with their LTC. This can become positive, but it takes time, patience and a willingness by both parties to enter each other's world. Only upon a common foundation, with a shared understanding of the value and meaning of compression therapy, will it become effective.