For centuries infections have been a major cause of morbidity and mortality and they remain the single highest cause of death worldwide.
- This article has been double-blind peer reviewed
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MacDonald, P. (2008) Exploring patients’ experiences of MRSA to help reduce HCAIs. This is an extended version of the article published in Nursing Times; 104: 9, 32-33.
BACKGROUND: MRSA has the capacity to cause high morbidity and mortality and have a negative effect on patients’ lives.
METHOD: A literature review exploring research on the lived experience of MRSA revealed a dearth of information. This led to a wider review of the lived experience of chronic infection and disease.
RESULTS: Studies of the experience of living with MRSA produced a narrow picture of the phenomenon. Patients’ experiences with other conditions provided a more holistic perspective. Three important themes – knowledge and understanding, fear and stigma, and camaraderie – are presented.
DISCUSSION: National policies on reducing healthcare-associated infections, including MRSA, do not acknowledge the importance of patient information, experience or involvement. Involving patients in local infection-control initiatives can be achieved via patient forums and local involvement networks.
CONCLUSION: Further qualitative studies should be carried out to provide knowledge on patients’ everyday experiences of living with MRSA.
Pauline MacDonald, MSc, BSc, ARRC, is nurse consultant in communicable disease, public health department, Dudley PCT.
For centuries infections have been a major cause of morbidity and mortality and they remain the single highest cause of death worldwide. For thousands of years those with infections were treated with dread and loathing; they were ostracised and excluded from general society. It was apparent that people who associated with those who were infected were likely to become ill themselves due to contact with ‘miasmas’ or ‘poisonous gases’ (Ayliffe and English, 2003).
The existence of micro-organisms as the cause of infection was only confirmed at the end of the 19th century, following the work of John Snow, Robert Koch and others. Hospital-acquired infections (HCAIs) were the scourge of many healthcare establishments and killed patients admitted for relatively minor conditions.
During the 1940s it was apparent that Gram-positive bacteria, primarily Staphylococcus aureus (S. aureus), were emerging as a particular problem in hospitals (Gould and Chamberlaine, 1995). The discovery of penicillin early that decade seemed to herald the end to HCAIs – hailed as ‘the magic bullet’, penicillin was thought to be a miraculous panacea for all ills. Used to treat all sorts of diseases, including those not caused by bacteria, it was incorporated into lipsticks and toothpaste, and even administered as a cure for baldness.
The dangers of its misuse were ignored, despite a warning from its discoverer, Alexander Fleming (1945):
‘There is the danger that the ignorant man may easily underdose himself and by exposing his microbes to non-lethal quantities of the drug make them resistant’.
Fleming’s warning was prophetic. Strains of S. aureus were resistant to penicillin within months of it being widely available. The organism’s resistance is predicated on its production of an enzyme called penicillinase, which renders penicillin ineffective. By the 1950s 64–80% of S. aureus hospital isolates were resistant to penicillin (Bradley, 1992). Resistance continued to spread and, by 1998, over 80% of all S. aureus strains were resistant (Duckworth et al, 1998).
Penicillin-resistant strains of S. aureus may be susceptible to other antibiotics, but S. aureus bacteria also demonstrate a capacity for multiple drug resistance. Meticillin (formerly ‘methicillin’ but changed to ‘meticillin’ to comply with EU drug nomenclature in 2003) is a penicillinase-stable antibiotic used in laboratories to indicate whether bacteria are sensitive to similar clinical antibiotics. Strains of S. aureus that are resistant to meticillin are known as meticillin-resistant Staphylococcus aureus (MRSA). Some of these strains are resistant to multiple antibiotics. Patients infected with MRSA may be left with few treatment options and are at risk of the same high morbidity and mortality as witnessed in the pre-antibiotic era.
MRSA prevalence is increasing. In 1990 only 5% of all S. aureus bacteraemias (blood infections) were MRSA. Between 2001 and 2006 the proportion rose to around 40% (Health Protection Agency, 2006). MRSA is now endemic in the majority of UK hospitals. Only six of the 73 acute trusts in England reported no MRSA bacteraemias between October 2005 and March 2006 (HPA, 2006).
Eradication of MRSA is difficult and cannot be guaranteed. Like sensitive S. aureus, MRSA can live harmlessly on patients’ skin and in their noses; this is termed colonisation. It also has the capacity to cause infections ranging from boils to bacteraemia. Patients found to have MRSA have it noted in their medical records, and this note usually remains for the rest of their lives. Consequently the number of patients accessing healthcare with MRSA, or a history of MRSA, is increasing all the time.
In healthcare settings MRSA is a risk to other patients and measures are taken to prevent its spread. Patients with MRSA are isolated and may have restricted access to treatments and services. The practice of isolation remains commonplace and is considered by some as a vital control measure. However, there are complaints that these patients are treated as ‘modern day lepers’ and restrictions should be relaxed. Concerns are growing that patients with MRSA are socially isolated, denied access to services and subject to the stress of unfamiliar treatments and regimens (Madeo, 2003). Increased knowledge of the transmission of micro-organisms should enable better isolation of the organism rather than the whole patient.
Despite this, there are anecdotal reports of draconian and ritualistic measures being imposed on patients (MRSA Discussion Forum, 2007).
Increasing numbers of patients are living with MRSA. The organism resists eradication and the word ‘cured’ is rarely applied to those patients who are affected. For many, it has become a chronic state, existing as colonisation, with or without infection.
Reducing MRSA is a top government priority for the NHS (Department of Health, 2007a). Despite numerous strategic documents, guidelines and initiatives, members of the public remain anxious about the possibility of catching a HCAI (Patients Association, 2006). If any of these initiatives are to work, and public confidence in the safety of healthcare establishments is to be restored, it is important to understand patients’ perspectives of MRSA.
It is likely that living with MRSA has an impact on patients’ daily lives but what are their experiences and how might the negative effects be mitigated?
In order to begin to answer this question, a review of the current empirical qualitative literature was conducted. Its aim was to investigate patients’ experiences of living with MRSA and to identify implications for practice, policy and further research.
It became apparent there was minimal research examining the phenomenon of living with MRSA. An extensive search was performed electronically, manually and via the internet. A search for ‘MRSA’ on Medline alone produced more than 6,000 references of opinion papers, studies, reviews, research letters and conference presentations. When searches were conducted for ‘MRSA’, ‘lived’ and ‘experience’ no references were obtained. ‘MRSA’ combined with ‘psychological’ produced only seven articles, and only three of these fulfilled the review inclusion criteria (Newton et al, 2001; Tarzi et al, 2001; Kennedy and Hamilton, 1997). It was also apparent there had been no literature reviews previously conducted on the topic.
It was intended that this review would analyse only qualitative, particularly phenomenological, studies of patients’ lived experiences of MRSA. However, these were, essentially, unavailable. Qualitative methodology was considered most applicable to answering the chosen research question as its essence is to gain insights into a person’s views, beliefs, feelings and opinions – it seeks to gain a holistic picture of a phenomenon from the individual’s perspective.
Only two studies were obtained that considered patients’ perceptions of having MRSA (Criddle and Potter, 2006; Newton et al, 2001). This led to a decision to include studies that examined patients’ experiences of living with other long-term conditions, infections and their experience of isolation. These were included as it was hoped they might reveal common themes that may be experienced by patients with MRSA, which could be confirmed or discounted with further research.
Some studies of mixed and descriptive quantitative methodology were included, particularly those that examined the experiences of patients in isolation. These were included as many patients with MRSA experience isolation at some point in their healthcare provision.
Nineteen studies were included in the review. Although different terminology was used, there were similar subject matters in the study findings. In the qualitative studies, topics and subjects were organised into themes. These themes, and the findings of the quantitative studies, were grouped to produce what was termed ‘review themes’. These were: knowledge and understanding, fear and stigma, isolation dichotomy, mood disturbance, communication, care facilities, normalcy, body image, camaraderie, faith and fate, and physical effects and pain.
This article focuses on three of the main themes:
Knowledge and understanding;
Fear and stigma;
The current national policies to prevent, control and reduce MRSA are discussed in the light of these findings and the implications for future policy, practice and research then considered.
Knowledge and understanding
This theme encompassed the level of knowledge and understanding of patients, relatives, visitors, acquaintances and staff. It included a requirement to understand the microbiology, aetiology, epidemiology, treatment and disease course. This theme was in every article found, regardless of the subject.
For many patients consistent information was lacking. Rarely did they feel well informed and in the cases when they did, this empowered them to take control of their lives (Kralik, 2002). There was a criticism that healthcare staff do not understand MRSA themselves and, consequently, do not transmit accurate information to patients (Criddle and Potter, 2006; Newton et al, 2001; Ward, 2000). There were strong calls for more written and verbal information, particularly concerning the rationale and procedures for isolation (Madeo, 2003; Ward, 2000; Gammon, 1999). There was evidence that, in the absence of a reliable source of information, patients with MRSA may use the media and internet – sources that, unfortunately, can be inaccurate and sensationalist (Hamour et al, 2003).
Fear and stigma
This theme encompassed patients’ fear for their own health, of infecting others and of being isolated, stigmatised and rejected. The fear of rejection appeared to be caused by other people’s fear of contracting the infection. This theme of fear and stigma was intrinsically linked to that of knowledge and understanding. Ignorance of the disease increased patients’ fear and that of those around them.
The fear of infecting others, particularly family and friends, led to an avoidance of loved ones and self-imposed isolation (Criddle and Potter, 2006; Kelly-Rossini et al, 1996). Feeling stigmatised was reported in accounts of being isolated (Madeo, 2003; Newton et al, 2001; Bennett, 1983), quarantined (Cava et al, 2005) and infected with hepatitis (Temple-Smith et al, 2004). Some participants in these studies felt like ‘lepers’ as they were avoided and shunned by others (Cava et al, 2005; Temple-Smith et al, 2004; Newton et al, 2001).
Camaraderie encompassed patients’ experiences of gaining comfort from knowing others had their disease, having access to the support and help of other patients and feeling alone with their disease.
It seemed that participants in the studies of long-term conditions and infection drew comfort from knowing they were not the only ones suffering from their condition (Hammerlund and Nyström, 2003; Öhman et al, 2003). Many felt the need to share their experiences and help educate others (Öhman et al, 2003; Kralik, 2002; Langemo et al, 2000).
Those patients who were isolated commented that they missed the contact and comfort that was provided by other patients (Knowles, 1993). Some also used other patients as a ‘yardstick’ by which they measured their own progress (Ward, 2000; Bennett, 1983).
Most people with a long-term condition are served well by self-help and support groups. Although the theme of camaraderie was not identified in the two MRSA studies, the popularity of the MRSA Discussion Forum (www.robprince.net/mrsa/forum.asp) as a means of support for those affected seems to confirm that this concept is relevant to patients’ experiences.
An examination of the current national guidance, initiatives and directives was made to assess the inclusion of information-giving, patient experience or patient involvement in policy and planning. The DH has made the reduction of MRSA one of six priorities for the NHS (DH, 2007a). There is a national programme and strategy for the control of HCAIs, including MRSA (DH, 2007b). As well as a strategy for reducing HCAIs the DH also has one for involving patients and the public in health. This ethos was first introduced in The NHS Plan (DH, 2000) and subsequent documents all titled under the banner Shifting the Balance of Power (DH, 2001a). These documents seek reform to empower patients to have a greater say in their care and to produce a more patient-centred service.
An initiative aimed at harnessing the contribution that patients can make to each other’s care and well-being is embedded in the Expert Patients Programme (DH, 2001b). This document acknowledges that, previously, ‘problems faced by a person with chronic disease have not been comprehensively dealt with by healthcare providers in the NHS, the social services providers or the employment services’ (DH, 2001b). Consequently, it recognises that people with long-term illnesses have common needs such as:
How to recognise and act on symptoms;
Using medicines and treatments;
Accessing social and other services;
Dealing with fatigue;
Developing strategies to deal with the illness’ psychological consequences.
The programme aims to develop the confidence and motivation of patients, enabling them to use their skills and knowledge to take effective control of their lives with a long-term condition.
Getting Ahead of the Curve (DH, 2002) is a 143-page document that sets out the UK’s strategy for combating infectious disease. There is a short chapter entitled ‘Communicating with the public’, which acknowledges that infectious disease problems ‘raise issues of risk, personal lifestyle and societal concern’, but there is no emphasis on the importance of providing patient information, involving patients in care planning or recognising the detrimental effect of infection on a person’s lifestyle. This was the seminal document that underpinned all the subsequent DH publications in the programme to reduce HCAIs, including MRSA.
A subsequent report, Winning Ways (DH, 2003), set clear directions for local actions necessary to reduce HCAIs. The subtitle contains the words ‘working together’ but there is nothing in the text about staff supporting patients emotionally and psychologically. The negative effects of infection on the individual – and the importance of healthcare workers and organisations collabrating with patients to inform them and ascertain their experiences – are not mentioned. The emphasis is on the role that healthcare workers and organisations have in reducing HCAIs but the value of patients’ experiences, views or needs is not addressed.
Saving Lives (DH, 2005a) provides practical interventions for use in acute care settings to reduce infections. The emphasis is on patient safety and carers’ responsibilities. Apart from recommendations that staff provide patients with consistent and accurate information about infection-control procedures, there is no mention of the impact of infection prevention, treatment or care on patients’ experiences or lifestyles.
The DH texts published under the banner of reducing HCAIs fail to acknowledge the importance of patient education, participation or quality of life. The emphasis is on the role of staff and organisations. A Simple Guide to MRSA (DH, 2005b) contains nothing about the likely impact of MRSA on the life of the person affected. It is highly factual and covers MRSA epidemiology and the infections that MRSA can cause. There is no mention of treatment or isolation or the likely impact of either of these on patients.
The strategy for screening patients for MRSA colonisation provides guidance for trusts (DH, 2006a). It details which screening swabs to take, when to isolate patients and when to give them eradication therapy. However, there is no mention of informing, reassuring or gaining patients’ consent.
In October 2006 the requirement to prevent and control HCAIs was underpinned in law with the publication of The Health Act 2006: Code of Practice for the Prevention and Control of Health Care Associated Infections (DH, 2006b). The code states that a healthcare organisation has a ‘duty to provide information on HCAI[s] to patients and the public’. This statement is expanded to include information on the risk and nature of the HCAI, isolation procedures and any measures they should take after discharge. This is an improvement on the publications before it, but contains no mention of the importance of learning from patients’ experience of HCAIs, involving them in care decisions, addressing their psychological and social needs or using them as expert patients.
There are currently two seminal texts on the control and prevention of HCAIs and MRSA in the UK – Pratt et al (2007) and Coia et al (2006). The English evidence-based guidelines for preventing HCAIs have one statement acknowledging that acquiring an HCAI may have ‘physical, social and psychological costs to patients and their relatives’ (Pratt et al, 2007). There is no further expansion or discussion of this statement. The definitive guidance on the control and prevention of MRSA in healthcare facilities (Coia et al, 2006) has one statement about isolation, which says that ‘Patients’ medical and psychological welfare should not be compromised by unnecessarily restrictive infection control practices’. These documents fail to emphasise the importance of the patient as the central figure when considering the impact of HCAIs.
The ethos of involving patients in health planning (DH, 2000) does not seem to be embedded in the initiatives to reduce HCAIs.
Implications for practice
National initiatives should acknowledge the importance of patient experiences and the contribution that patients can make to care planning and policy decisions. Local Expert Patients Programmes could be expanded to include people affected by MRSA.
As part of the DH’s commitment to improve patient and public involvement in the development of health and social care services (DH, 2006c), every local authority will have local involvement networks that could be consulted on trusts’ infection-control programmes and involvement in planning and implementing local initiatives. All practice-based commissioning (PBC) clusters will be obliged to host patient forums as part of PBC arrangements. These forums will provide a venue for discussion and consultation of local infection prevention and control issues.
There are many possibilities for research in this much-neglected area. If patients are to be involved in MRSA-reduction initiatives, there must be a better understanding of their experience of living with MRSA.
A qualitative study using phenomenological methodology would provide a rich and authentic view of what it is like to live with MRSA at home. Funding from a peer-reviewed body is necessary for wider studies to explore the experiences of patients with MRSA. Study designs would have to consider those colonised or infected with MRSA, and would need to address the differing experiences of patients in relation to gender and age. In particular, they would need to investigate patients’ everyday life experiences in their own homes.
MRSA is an important infection for both those who contract it and those who care for them. It has the capacity to cause high morbidity and mortality, and its control and treatment can have negative impacts on patients’ experiences. Some evidence suggests that patients’ experiences of MRSA are improved if they have access to support groups and accurate, consistent information as well as being involved in helping to educate and support others who are affected.
Patients’ experiences may be valuable in the planning and implementation of infection prevention and control initiatives, but there is minimal evidence that patient experience and involvement is at the core of national projects to reduce MRSA. At local level, providers should ensure that opportunities provided by the Expert Patients Programme, GP and local-authority patient panels are used to make MRSA patients’ involvement in healthcare delivery a reality.
A wider qualitative study is needed to investigate patients’ experiences of living with MRSA. This will help increase knowledge and awareness of this important aspect of its impact.
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