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Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_782_Библиотеки_им_академика_М_И_Перельмана

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332 PersonalisedCareinlegUlCeration
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Lower limb leadership, like any type of clinical leadership, means encouraging each other in terms of leadership at all levels. This moves the practitioner from managing one person well to the health of the population. Examples may include developing leader­ship skills in lower limb management, challenging the narrative or the myths around compression therapy discussed later in this chap­ter, bringing data together to identify variation in outcomes or health inequalities and introducing the concept that ‘change begins with me’. Leadership requires courage because the practitioner will challenge the power of individuals or the system; it requires the practitioner to articulate their knowledge and explore the local evi­dence even when they feel they lack the competence or con­dence to do so.
A PROBLEMATIC CULTURE WITHIN LEG ULCER MANAGEMENT
A number of myths exist in the culture of leg ulcer management that are not helpful and distort a focus on personalised and holistic care (Wounds UK2022). These have also been the focus in other chapters, for example the myths that foot compression should be avoided or that compression during and after deep vein thrombosis is dangerous are explored and challenged in Chapter8.
Practitioners should be aware of the prevailing culture in which they work, especially where myths are seen to eect clinical activity. Mannion and Davies (2018) describe organisational culture as shared ways of thinking, feeling and behaving, which are driving forces that can act for change or undermine improvement initiatives (Mannion and Davies2018). Unhelpful perceptions in the culture of leg ulcer management can generate a culture of blame for the person with leg ulcers and can prevent the practitioner from challenging their peers or indeed challenging themselves in their need to change practice. Table7.7 describes some of the common prevailing views in leg ulcer management; these are explored in more detail in Chapter8.
In addition to unhelpful perceptions or myths, system delays in obtaining the right care at the right time can have signicant impacts on the trajectory of the person’s wound and their lived
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TABLE7.7 Common views ofleg ulcer management.
Myth Reality
Some people see a
benet to keeping their wound unhealed.
Compression to the
foot must be avoided.
A little compression
is better than none.
Strong compression
above a moderate 40
mmHg
is a risk.
When compression
therapy is painful, it is not suitable for the person with leg ulcers or compression dosage must be reduced.
With the exception of factitious injuries, there is no
evidence of this within lower limb research.
The foot needs to be compressed so that the foot
pump is enhanced and oedema is not forced down to the foot from compression in the gaiter area. Compression also supports the foot better and aids in walking.
Most people with non-
lymphorrhoea need eective strong compression to heal swiftly. When compression is mild and
therapeutic, this allows deterioration and
non­poor management of exudate. Pain can thus be severe where there is mild compression.
Like all therapy, risks need to be assessed and
proactively managed. If moderate compression is not healing the ulcer or managing exudate, the actual risk of non­of life is high. Non­need a non­compression to heal.
Compression needs to be applied well and
comfortably, then it will be tolerated and all the benets of therapeutic compression will be received. Why it is painful requires exploration and to be acted on. The common reason for lack of tolerance is poor application technique or the use of a product not suitable to the person’s lifestyle. The importance and rationale for compression need to be explained to allay the person’s fears, increase their knowledge of this vital therapy and encourage acceptance. Dosage of compression should only be reduced to gain trust and then swiftly increased; be aware of the risk of deterioration with non- therapeutic levels of compression.
standard approach and strong
ischaemic leg ulcers and
healing and having poor quality
standard limbs (long/wide)
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TABLE7.8 
Local systems may not respond swiftly to the eective management of a
skin tear on the lower leg (LeBlanc and Baranoski2014), which presents the risk of deterioration to an open leg ulcer.
The primary care nurse may not have been trained in the use of
compression despite the national guidance on provision for eective management, leading to an inexperienced workforce (Broadhead etal.2018).
Delays in initiating compression therapy such as reduced access to
diagnostics or the ankle brachial pressure index (ABPI) can allow deterioration and pain to take hold (Hopkins and Samuwiro 2022).
System delays that will have impacts onpatient outcomes.
experience (Table7.8). Practitioners should recognise the challenges this generates: inadvertently compounding existing health issues, allowing wound deterioration and unmanaged oedema or prevent­ing opportunities for management and timely healing. Delays and inadequate system responses will certainly make a standard plan more dicult to tolerate and thus have signicant impacts on the person’s health outcomes.
It is useful to review the antiquated idea of the ‘social ulcer’: the prevailing view that some people with leg ulcers want to ‘keep’ their ulcers for the social gain this brings. This view can be perpetuated by giving it an ocial title, the ‘social ulcer’ making the concept feel legitimate. This term started with an article by Wise with that title (Wise1986). The author described their perspective on the relation­ship of social isolation to non-
healing or recurrence, accepting anec­dotal stories of ‘the knitting needle syndrome’ where patients create wounds to keep the nursing visits. Despite the unsubstantiated claims, the term resonated for many and is still used within the com­munity and by industry, giving credence to this belief, despite lack of evidence. Phrases like this can take on a life of their own and it is incumbent on practitioners to bring critique to the underlying beliefs, as such a catchphrase halts conversations and prevents deeper discussion with the patient to understand their viewpoint or how it is for them to experience leg ulceration. Morgan and Moatt (2008) conclude that such ‘perceptions have resulted in the labelling of patients, which has negatively inuenced the care and manage­ment of this patient group’. Yet people’s lives are disrupted and they
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have to develop a variety of coping mechanisms to manage this change (Hopkins2004).
CHALLENGING NON- COMPLIANCE
A key topic in the healthcare culture of leg ulcer management that we need to expose and address is the prevailing view on non­compliance. Similar terms are ‘non- adherence’ or ‘non- concordance’. Hobden’s examination of the term concordance (Hobden2006) was that it ‘has evolved from terms such as non- compliance and non­adherence and reects a shift in the culture of health care interven­tions, aiming to empower patients’. That may be so from a more academic viewpoint, but the prevailing language used within leg ulcer management is that of poor compliance and dicult patients. Whichever term is used, practitioners need to understand the power dierential in the practitioner–patient relationship. Practitioners do expect the patient to take on the ‘sick role’ and to take and adhere to the practitioner’s advice. The conict comes when this does not hap­pen and at this point the patient can be labelled as ‘bad, dicult, disobedient’ (Morgan and Moatt2008).
When practitioners are asked about what prevents good out­comes, ‘non- compliance with treatment’ is often raised (Hopkins and Samuriwo2022). Examples are typically provided of all the tac­tics and products used in order to achieve compliance, alongside a comment that ‘we have tried everything’. These patients could be described as ‘unpopular, dicult or “heartsink”, without actually being aware of such marginalisation themselves or the impact that such a “label” may have on their subsequent care’ (Green and Jester2019). See Box7.2 for one person’s experience.
Practitioners may sometimes be quick to accept the hesitancy of a person with leg ulcers about compression, rather than exploring the reasons behind it more thoroughly. The assumption is that it is the person’s fault for their lack of tolerance, whereas it is the practition­er’s duty to assess, plan and implement care in a personalised way, which maximises tolerance and utilises their knowledge and under­standing of what can work for the patient. Hughes and Green (2019) examined the root cause of poor ‘compliance’ with compression hosiery. The themes they identied were discomfort and pain, issues
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Box 7.2 A Patient’s View onthe Term
‘Non-
compliant’– Tracy, Legs Matter
Patient Partner
I had never heard the term before and did not know what non­compliance meant! So the thought that I could have been labelled as non- compliant or non- concordant is actually quite upsetting as I believe I am a good patient. I have put up with so much over the years in terms of pain and discomfort and I have always tried any treatment I have been oered. However, there have been times when it has been too much for me and I have pulled my compres­sion hosiery o (or cut the bandaging o in the early days). I would challenge anyone to be 100% compliant all of the time. Life gets in the way and coping with chronic pain is really hard at times. When I had a painful dressing, I would absolutely dread it because I knew I would be in extreme pain for the whole day and all night. I would cry all night because the pain was so bad, because I was so tired and knew I would struggle the next day looking after my children. I am ashamed to say that I would take extra pain relief because I was so desperate for a good night’s sleep. There would only be so much I could deal with and after a few weeks, I would ask the nurse to try a dierent dressing. Patients don’t choose to be ill or to need medical treatment and it is very hard to remain 100% perfect when your quality of life is gradually disappearing down the drain. If this meant that I was non- compliant, then this is hard to accept when I am only human.
What I would ask clinicians to reect on:
To discuss this with the patient so they are not given a label
they are unaware of; it is not fair treatment.
To ask why they are not able to adhere to the treatment; there
may be multiple answers than can be managed.
To avoid this type of labelling, to understand that a patient’s
life can be hugely complex and they have a lot to adjust to.
Has the reader ever not adhered to the advised treatment plan
or instructions that they know would improve their personal health? If yes, reect on why that was and bring that learning into leg ulcer management.
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with application, education and understanding, and aesthetic issues with the hosiery. The topics that led to the primary themes were very personal and included embarrassment, reliance on others, pain and limited belief in the ecacy of the hosiery. Thus, people with leg ulcers can express both intentional and nonintentional non­compliance (Moatt etal.2017). This demonstrates the inadequacy of the term non- compliance within the clinical situation: it does not help to address the multifaceted underlying issues or the fact that, within their view of the world, the lack of adherence may be a sensi­ble option for them in their context of their social environment, com­fort and balancing the management of their life. The clinician needs to see beyond the term non- compliance in order to have an open and creative personalised discussion so that a co- created management plan can be developed. Box7.2 provides the lived experience of some­one with leg ulcers.
It is well- established that the achievement of comfortable com­pression is key to leg ulcer management, and that applying compres­sion eectively is a skilled procedure that needs consistent provision. When these are lacking, the person should not be blamed– rather, practitioners should seek to address the issues that are creating barri­ers to eective compression. In the same way that we need to believe that there will be a successful outcome to going to the gym, changing our diet or walking more, the person with leg ulcers needs to see and believe in the power of compression therapy to create the healing they desire. Practitioners and the person with leg ulcers need to understand that application is more than a task, and that the focus of intervention and desired outcome should be making treatment toler­able and eective. Such demonstration and understanding will have a benecial impact on the culture of leg ulcer management.
It is evident then that personalised care and an understanding of the impact of social determinants contribute to the holistic approach required to create an eective healing environment. A shared approach to care planning is needed if care is to be truly holistic. Starting from, or at least taking into consideration, the person’s expe­rience provides the foundation for the delivery of eective care and education that supports empowerment and self- management. It is essential that practitioners develop awareness of and start to chal­lenge the barriers to care within the culture of nursing and health­care delivery in order to achieve this.
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UNDERSTANDING THELIVED EXPERIENCE
Practitioners must make themselves aware of what it is like to live daily with a leg ulcer. Arguably, it may be possible to become de- sensitised when working with people with leg ulceration daily. Numerous qualitative studies explore people’s experience and the impact of having a venous leg ulcer (Green et al. 2014; Cunha et al. 2017; Hopkins 2004; Phillips etal. 2018; Leren etal. 2020). These studies identify that people with leg ulcers experience signi­cant pain, sleep disturbance, diculties with footwear, problems with odour and exudate, and mobility issues. This can result in sig­nicant negative social and psychological impacts, and in severe cases can lead to social isolation, a negative body image and even loss of work. Green etal.’s (2017) study participants described the impact of exudate and odour on their daily lives, creating ‘embarrassment, shame and stress’; in order to bring some control into their life they ‘may make a conscious decision to limit social contact, creating an almost self- imposed isolation’. This is because they feared others’ reactions and this therefore altered their daily lives (Green etal.2017). Some patients are more marginalised than others and this is explored further by Geraghty (2021) when listening to the lived experience of patients who inject drugs.
There is a growing narrative in leg ulcer management that peo­ple with leg ulcers primarily want to have better symptom manage­ment rather than healing. It is dicult to argue against this need for improved symptom management, but in reality very few people want to live without hope of healing. The majority of people with venous leg ulcers should indeed heal if the healthcare system worked swiftly, allowing fast use of compression therapy; healing is the outcome that services should be aiming for. Thus, practitioners should listen care­fully to the underlying assumptions being made within publications and case studies where this secondary focus of improved life is ele­vated above healing, leading again to the belief that healing is not achievable.
Unfortunately unless the health system allows early intervention and excellent use and review of high compression, then many more people are destined to descend into painful leg ulceration. People often agree to tell their story, to reect on their issues, in order to
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provide learning from their experiences to prevent others from having the same. There is now sucient evidence and knowledge to enable the vast majority of leg ulcers to be managed eectively. We need to ensure that the healthcare system is joined up and that determinants of health are considered holistically if we are to safeguard future lives. To move away from the medical model of care, other resources, tools and approaches can be drawn on to create greater agency for the person with a lower limb condition.
SUPPORT PERSONAL HEALTH MANAGEMENT THROUGH PATIENT ACTIVATION
Patient activation is an umbrella term for helping the person with leg ulceration to manage their own health and care, but it is important to break this down so that we can see the steps, the inuence and also what it is not. Table7.9 explains this.
A review on patient- centred intelligence (Strategy Unit and Ipsos MORI2021) provides a useful tool from which to evaluate a patient activation and engagement strategy. The review describes three steps: the easy to implement such as communication, patient letters and care planning; the organisational change such as patient access to records and shared decision aids; and the nal and more complex
TABLE7.9 
Patient activation identies patients’ willingness and ability to take their
own actions to manage their health and care. The Patient Activation Measure (PAM) tool helps identify where they are in this process and will help in practitioners’ understanding.
Activation is not a focus on getting the person to comply with the advice
given. The focus is on the development of skills, knowledge and condence in order to support this.
Activation is part of an engagement strategy. Practitioners have dierent
ways of engaging patients in this journey and they range from the simple to the more time- consuming.
Source: Adapted from Hibbard and Greene (2013).
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The rationale forpatient activation.
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oer that will be suitable for a specic cohort such as peer support and motivational interviewing. Thus, one size does not t all, but has to be tailored to the needs of the patient.
PATIENT ACTIVATION MEASURE
PAM is a validated questionnaire designed to measure the knowl­edge, skills and condence a person has to manage their health and well- being (NHS England 2019b). Importantly, this tool captures their belief about their ability and the likelihood of them acting on this belief. This is very much linked to understanding where a patient believes their level or locus of control is, whether it is internal belief (and within their control) or resides externally through others such as health practitioners (Ingleby2020). Addressing this locus of con­trol therefore is by activating the patient through building their knowledge and condence in creating change. The PAM tool pro­vides an individual activation score of 1–100with four levels of acti­vation and is described in Table7.10. The higher the score, the more engaged or activated the person is to bring in actions to improve their health.
SHARED DECISION- MAKING
A plan of treatment needs more than clinical knowledge. With the exception of some clinical tasks or diagnostics, the person you are working with has to live all the time with the treatment plan you devise. For this to work for them they need to believe that it will be eective, that the diculties they encounter will be worth it in the end, that they will see the good eects of the treatment plan and that underpinning all of this is that their humanity is recognised. The plan of treatment needs to resonate or meet with their understanding and a clinician needs to create a space for that to work.
Shared decision- making is both a philosophy and a process (Health Foundation2010). By allowing time to explore the person’s world view and their understanding, there is a subtle shift in the power dynamics: you are emphasising that their views on what will or will not work will be listened to and taken account of. Delivery of
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TABLE7.10 
Level 1: Disengaged and overwhelmed. Consider that they may have too many health or social concerns to focus on
the leg ulcer at the moment. Level 2: Becoming aware but still struggling. You may hear them express their desire to change an action but the
behaviour does not meet this. Level 3: Taking action. You may see that a suggestion is acted on or their own simple goal is met. Level 4: Maintaining behaviours and pushing further. These citizens are simply easy to work with as they are taking control of
their health because they have the knowledge, skills and condence
to do this.
Source: Adapted from NHS England (2019b).
Patient activation scoring inthe patient activation measure.
tasks such as compression are adjusted to what the patient believes works for them or needs to be tackled.
Exploring and listening are the basis from which to progress from improving the person’s knowledge, thereby building self- condence and enabling steps to be taken in their self- management and empow­erment; these are the steps needed to create change or greater control. Within the prevailing healthcare culture, people with leg ulcers and their families need to have information to be advocates for themselves and to be inuential in their own health outcomes. This requires a move away from a medicalised model of care delivery where ‘dialogue may be paternalistic and imposed rather than negotiated’, encourag­ing people with leg ulcers to disengage from their care-
givers as they
do not perceive themselves as equal partners (Green and Jester2019).
To enable shared care, knowledge ow between the practitioner and patient needs to increase. Both need to be active participants in this change. Practitioners need to move from passively attending study days and knowing how to apply a compression regime, to actions that include bringing critique to the culture they work within, actively listening and sharing in the setting of treatment goals and plans with their patients. People with leg ulcers need to move from being passive recipients of care to feeling encouraged to listen to their body, identify what helps or hinders their tolerance and be bold in describing this and asserting their needs.
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