Caring for a person living with a long-term condition
The Department of Health (DOH) England, defines a Long-Term Condition (LTC) as “one that cannot currently be cured but can be controlled with the use of medication and/or other therapies” (Department of Health, 2010, p. 4). According to Roddis et al (2016), there are around 20 million people who have a LTC in England. Furthermore, NHS England (2015) states those with a LTC are the biggest users of the NHS. Therefore, this case study will explore the holistic care given to an individual with the LTC Chronic obstructive pulmonary disease (COPD) and the impact it has on them, their family and society. In accordance with Nursing and Midwifery Council (NMC, 2018) guidelines, confidentiality will be maintained throughout using pseudonyms Alice for the patient and Emily for their daughter.
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Alice, a 56-year-old female, has been living with COPD for several years, which has recently worsened, resulting in frequent hospital admissions. Alice is a heavy smoker and has been for most her life, which could indicate the cause of the COPD (WHO, 2016). However, evidence suggests Alice’s occupation in a factory environment also has a major impact on the COPD symptoms (Thorne, 2016; De Matteis et al, 2016; Sadhra et al, 2017). Additionally, Alice suffers from depression and anxiety, Pumar et al (2014) suggests these are regularly occurring comorbidities in COPD patients. Alice’s daughter, Emily is her foremost carer assisting with attending appointments, financial assistance and general companionship. Emily has her own family and work commitments; however, she struggles to effectively support her mother, finding it hard to commit to appointment times and evidently portrays feelings of guilt with the need to support her mother at the hardest times.
COPD is defined as an umbrella term for chronic progressive lung diseases obstructed by airflow (WHO, 2016). The British Lung Foundation (BLF) (2018) states you are most likely to develop COPD if you’re over 35 and are, or have been, a smoker, although there are other factors contributing (NHS Digital). Additionally, COPD can cause various other physical symptoms, resulting in a loss of functionality and high levels of psychosocial distress (Gardner et al, 2018).
According to Snell et al (2016), COPD epidemiology continues to represent an extensive burden on the NHS. Furthermore, a report conducted by The BLF, analyses the economic burden of COPD in the UK, revealing the financial cost to the NHS, averaging £1.9 billion per year (BLF, 2018; NHS Digital). Moreover, studies predict COPD will be the leading cause of death worldwide, estimating an increase to NHS costs by 2030, which has significantly risen from previous data (WHO, 2016; Lozano, 2012; McClean et al, 2016). Comparatively, local data for NHS Walsall CCG (COPD: QOF prevalence) states a rise since previous reports and is significantly above the National average. Therefore, thus predicting COPD is a worsening condition and the number of people diagnosed will increase extensively, suggesting services need to adapt to this increasing demand.
Research suggests smoking is generally known to be the leading cause of COPD. Therefore, it could be argued that Alice’s occupation and lifestyle choices such as smoking, has contributed to the worsening of her LTC (Jiménez-Ruiz et al, 2015). Furthermore, studies suggest occupations where individuals are exposed to dust, fumes and chemicals can also contribute to developing COPD, such as industrial work (Thorne, 2016; De Matteis et al, 2016; Sadhra et al, 2017). However, COPD can also develop from the inherited enzyme alpha-1-antitrypsin deficiency (AADT). A genetic condition which can make individuals increasingly more vulnerable to the effects of inhaling toxic materials (Haitham et al, 2017; Brode et al, 2012). According to recent studies, COPD often goes undiagnosed among at-risk patients until symptoms are pronounced because many patients attribute their worsening symptoms to the natural process of ageing (Lindgren, Storli and Wiklund-Gustin, 2014). Therefore, although genetically, COPD development is rare, with the exposure to toxic materials, the plausibility in developing COPD is likely to increase, due to lifestyle choices, the ageing population, social and economic detriments of health, (NHS, 2015).
Charmaz (1983) suggests those with a LTC suffer from leading restricted lives, social isolation, being discredited and the feeling of burdening others. Additionally, an individual’s personality and outlook on life can have an impact on their LTC. However, Ansari et al (2014) states COPD patients have difficulty recognising its importance and long-term implications. The revised framework of Kubler-ross and Kessler (2014) “the five stages of grief”, relate accordingly to those with COPD with several studies encapsulating these elements of grief, for instance; denial after diagnosis (Papava et al, 2016), guilt for past habits (Lindqvist and Hallberg, 2010), and acceptance of the LTC (Ansari et al, (2014).
Alice’s daughter Emily entrusts the care giving role, providing support and evidently encounters her own anxiety and hardship. Schulz and Eden (2016) suggests families depend on one another to provide emotional support and assistance when they can no longer function independently. Additionally, Cruz et al (2017) states family members are the primary source of support for relatives with COPD, frequently coordinating care tasks, including management of their symptoms, mobility and personal care. However, Gardener (2018) argues, the caring role entrusted by family members, harbours potential strain on those relationships and carer support is not always necessary for those with COPD. Furthermore, Mi et al (2017) suggests symptoms of anxiety and depression in COPD patients and their carer are significantly associated. Moreover, the presence of anxiety and depression appears to correlate with symptoms such as dyspnoea and fatigue, consequently, worsening prognosis and compliance (Yohannes, 2017; Miravitlles, 2017), resulting in higher hospital attendances (Uchmanowicz et al, 2016). Additionally, Gardener et al (2010) states, individuals are restricted not just by the physical effects of their symptoms, but also by the fear associated with worsening symptoms. Therefore, Alice’s current presenting symptoms concludes the likeliness of experiencing these psychological conditions, are due to fears about dyspnoea, subjectively making symptoms worse.
NICE guidelines (2010) and the Five-Year Forward View (2014) identified the role of the multi-disciplinary team (MDT) in COPD management (NICE, 2010; DOH, 2014), suggesting the MDT are important to assist in treatment and management of the LTC. Kruis (2014) states, MDTs have recently been more prominent in the management of patients with COPD. Furthermore, Kuzma (2008) describes patients can benefit from MDT involvement with roles complementing each other and contributing to the ultimate goal of providing high quality holistic care. However, studies suggest the role of the nurse in particular as being invaluable in providing advice, education and support as they are involved in all stages of their care and particularly in preventing unnecessary hospital admissions(Yorke, 2017; Fletcher Birthe and Dhal, 2013). Therefore, it’s appropriate for Alice to have an interprofessional collaboration involved in her care, consisting of general nurses, specialist respiratory nurses, physiotherapists, dietitians, psychologists and doctors. Together, focusing on reinforcing Alice’s care plan, providing education, support and management of the LTC.
Arguably, Boulet (2016) states the concept of “expert patient” has recently been developed defining a patient as having significant knowledge of their LTC and treatment in addition to self-management skills. Thus suggesting, Alice is the expert in her own LTC. Nonetheless, the management of COPD is particularly challenging, due to complex health and social needs, it requires life-long monitoring and treatment. Therefore, expert advice needs to be given to patients within the community and MDTs need to work together along with the “expert patient” to avoid further hospital admissions and costs to the NHS (Partridge, 2015)
Vesbto and Lange, (2015) suggest little has been done in order to identify if certain patients would benefit more from one type of preventive strategy than another. Furthermore, Starren et al (2012) state healthcare support alone cannot improve the situation on its own. Therefore, understanding the support needs of individuals with COPD is important for the delivery of holistic care (Gardener et al, 2018). Concordantly, Alice was provided relevant treatment needed such as medical management including medications to treat exacerbations. However, to prevent further hospital admissions and improve quality of life it would be beneficial for Alice to receive further assistance to relieve anxiety symptoms such as psychological support, advised on smoking cessation programmes and referred to charities and support groups. Comparatively, The Wolverhampton Integrated Respiratory Lifestyle (TWIRL), provides weekly meetings for COPD patients to diminish social isolation and offer advice and support.
As previously evaluated, smoking is recognised as the most common cause of COPD. Analytically, approximately 50% of COPD patients are smokers (Wu and Sin, 2011; WHO, 2016). However, Public Health England’s latest tobacco report reveals a reduction in smokers since 2011 (PHE, 2017). Furthermore, research suggests self-management interventions can improve quality of life, reduce hospital admissions, and improve symptoms (Kaptein et al, 2014; Russell et al, 2018). Therefore, successfully managing COPD may include making multiple lifestyle changes such as smoking cessation and starting an exercise regime as well as medication adherence, although this may be hard to achieve in some.
The strategy of the Global Initiative for COPD (GOLD, 2013) encourages early detection and prompt diagnosis which should increase enrolment in smoking cessation programmes. According to Tonnesen (2012) this is the best way to increase survival, decrease mortality and diminish the effects of COPD. However, Eklund et al (2012) argues, although individuals are aware of the risks, those with COPD find it hard to quit smoking due to lifelong habits and lacking internal motivation. Therefore, with the correct advice and support from relatives and care providers Alice has a higher chance of quitting her long-term habit, ultimately increasing her chances of an improved quality of life.
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Non-pharmacological strategies for preventing exacerbations could potentially have a significant effect on risk reduction (Vestbo and Lange, 2015). Brein et al, (2016) suggests, non-pharmacological interventions such as Pulmonary Rehabilitation (PR) and Cognitive Behavioural Therapy (CBT) may help if accepted and targeted appropriately, although these are under-used and sometimes declined by patients. Furthermore, Yohannes (2017) suggests, the use of CBT and PR is useful for short term management but not effective for long term management. Additionally, Thomas et al, (2015) suggests non-pharmacological music therapy such as community singing programs may improve quality of life for breathless people. However, Luhr (2018) argues self-management programmes do not serve as means to influence patients’ experience of patient participation in the care of their LTC. Therefore, suggesting further studies are needed to what facilitates patient participation.
Additionally, valuable support and advise is easily accessible and available for patients and their families, such as; The British Lung Foundation and COPD Foundation. Online communities are also available such as Patientslikeme.com and Patient.co.uk providing reassurance and concerns with others experiencing the same LTC. Moreover, The Care Workers Charity is available for those in the caring role such as Emily is for Alice. However, Gardener (2010) argues although COPD patients have regular contact with health services and are given advice, access to specialist services is poor due to lack of understanding of the condition and particularly denial.
Regulations in pharmacological interventions suggest, treatment for early stages of COPD should begin with inhalers and/or nebulizers, if these are ineffective regular medications such as steroids will be prescribed. Nonetheless, the most frequently prescribed are inhalers and are considered the most essential of COPD management (Matteo and Usmani, 2015). However, GOLD (2017) and NICE (2018) recommends the pharmacological treatment of COPD should be complemented by non-pharmacological interventions such as smoking cessation, exercise, PR, and CBT for treatment and managing symptoms to be effective (Fernandes, 2017; Singh et al, 2018)
Additionally, long-term oxygen therapy (LTOT) and non-invasive ventilation (NIV) are routinely prescribed for those with severe COPD (Ankjærgaard, 2016; Alifano et al, 2010) and is given to improve life expectancy and hypoxaemia at rest (Ekstrom et al, 2016). However, research suggests, the use of LTOT at home can be dangerous for the patient and their family, for instance; tripping over equipment and fires or burns from cigarette smoking (Albert et al, 2016). Furthermore, a Cochrane review found LTOT had uncertain effects on dyspnoea and did not improve quality of life (Ekstrom et al, 2016). Therefore, NICE (2018) recommends, risk assessments should be conducted prior to offering LTOT as the risks to them and the people they live with outweigh the potential benefits. Alice did not yet require LTOT, however it is likely to be needed and will have a more negative impact on her life, especially since Alice currently still smokes.
To conclude, patients can improve self-efficacy by taking control of self-care. Healthcare professionals need to empower patients in managing their LTC. For COPD self-management to be effective, patients’ psychosocial needs must be prioritised alongside medication and exacerbation management. In addition, patients’ personal beliefs regarding COPD and its management should be reviewed periodically to avoid problematic behaviours and enhance positive adaptions to the disease. Finally, practitioners require greater education, training, and support to successfully assist patients in managing their LTC.
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