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Keywords:

  • Content Analysis;
  • Infection;
  • Methicillin-Resistant Staphylococcus aureus;
  • MRSA;
  • Patient Experience;
  • Qualitative Interviews;
  • Sweden;
  • Wounds

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

ANDERSSON H., LINDHOLM C. & FOSSUM B. (2011) MRSA – global threat and personal disaster: patients' experiences. International Nursing Review58, 47–53

Aim:  To ascertain and describe the patients' knowledge, perceptions and experiences of being methicillin-resistant Staphylococcus aureus (MRSA) positive.

Background:  Antibiotic resistant bacteria are a serious global threat. MRSA can cause wound infection, pneumonia, septicaemia and mortality. This qualitative study has focused on patients' experiences of living with MRSA.

Methods:  Fifteen patients with MRSA-infected wounds were interviewed. All data were transcribed verbatim and analysed according to content analysis.

Findings:  Information about the MRSA diagnosis often caused a shock-like reaction. Patients' perception of being MRSA positive was stigmatizing as plague or leprosy; they felt dirty and felt that they were a severe threat to their environment. Fears of infecting someone else and being rejected were commonly expressed. The key findings emerged as a theme: Being exposed to others' shortcomings and being a threat to others' health. Three categories were identified: understanding and emotional reactions, treatment by the healthcare professionals and consequences and expectations. Gaps in both patient and staff knowledge of MRSA led to unnecessary misunderstandings, causing fear, social isolation and suffering.

Conclusions:  Living with MRSA can be extremely stressful for the patients. Knowledge and empathy from staff involved in their care is crucial to optimize patients' experiences. Staff education to meet patients' demand for information and prevent contamination is essential.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

Methicillin-resistant Staphylococcus aureus (MRSA) is responsible for serious problems globally. Alarming reports from Australia, USA, South Africa, Brazil, Japan, China and Europe indicate a threat to the healthcare system and individual patients (Coombs et al. 2009; Izumida et al. 2007; Klevens et al. 2007; Perovic et al. 2006; Salomao et al. 2008; Tiemersma et al. 2005; Wang et al. 2009). In countries such as Russia, Jordan, Egypt and Cyprus, up to 50% and even more of isolated S. aureus strains show resistance to methicillin (Baranovich et al. 2009; Borg et al. 2007). Although Sweden has a low prevalence of MRSA, about 1%, it presents a serious problem for society and health care (EARSS 2008; Stenhem et al. 2006).

MRSA is a resistant variant of S. aureus, a commensal found in the nose, throat and perineum and on the skin. Like other Staphylococcus strains, it can cause pneumonia, septicaemia and is associated with a substantial mortality (Klevens et al. 2007). Older or debilitated patients and those with an impaired immune defence are more susceptible (Demling & Waterhouse 2007; Shurland et al. 2007; Tacconelli et al. 2006) and those with open wounds are particularly at risk of progressive infection (Demling & Waterhouse 2007; King et al. 2006). MRSA has been associated with patient care in hospitals or nursing homes, but community-acquired MRSA infection is nowadays also a severe problem (Klein et al. 2009).

Staff who fail to follow general infection control procedures are likely to spread this infection via clothes and hands (Henderson 2006), although it can occur in individuals with no prior healthcare exposures (Popovich & Hota 2008).

Swedish regulations state that alcohol-based hand disinfectant shall be used before and after direct contact with a patient. Protective gloves and disposable plastic apron or protective gown should be used when in contact with body fluids or other biological substances (The National Board of Health and Welfare 2007). Regulations for how long MRSA patients should be considered as carriers of the microbe after the primary infection differ throughout Sweden. In Stockholm, the capital of Sweden, MRSA guidelines state that no patient can be declared non-contagious even if new and repeated cultures are negative or the wound is healed. MRSA-positive patients receive a red card to be presented at all future contacts with healthcare (Infectious Disease Control Unit 2009). After initial information about MRSA infection, given by a physician – often the general practitioner (GP) – an infection control team meets the patient. They provide both verbal and written information on MRSA, activities of daily life and how to reduce the risk of transferring the infection to others within their family or community.

However, although we have information on managing the problem in practice, there is little information regarding the patient's personal experience of MRSA infection, their knowledge about MRSA and its impact upon daily life (Criddle & Potter 2006; Lindberg et al. 2009).

The study

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

Aim

The study aims to ascertain and describe patients' knowledge, perceptions and experiences of being MRSA positive.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

Study group

A purposive sample of MRSA-positive patients with wounds was selected by the first author (HA) and the two MRSA teams in Stockholm.

To enhance credibility, we interviewed persons of different gender and ages to obtain as wide and varied experiences of the phenomenon as possible (Lincoln & Guba 1985; Patton 2002). Those participating had to be aged 18 years or over, understand Swedish and live in Stockholm. Potential participants were contacted by telephone and the aim of the study was explained. If they agreed to participate, written information was sent, and a time and place for the interview arranged.

Fifteen participants were interviewed; 7 were male (21–90 years) and 8 female (22–83 years).

A total of 19 patients were contacted, one patient failed to attend the interview, one changed her mind, one was too ill and one left Stockholm.

All participants had been diagnosed with MRSA after a healthcare consultation for non-healing wounds between 2 and 14 months before the interview. Ten had become infected during hospitalization or other contact with healthcare and five had a community-acquired infection. Five of the participants had been infected abroad. Thirteen had healed wounds at the time of the interview.

Data collection

A semi-structured interview with open-ended questions was used, which facilitated participants to describe in their own words their experiences, perception and knowledge of MRSA infection (Kvale & Brinkmann 2009). This format allows both the sequence and form of questions to change in order to follow up the answers given and stories told. To minimize bias and to interview without prejudice, the interviewer did not meet the participants or read their medical records before or after the interview.

Examples of questions from the interview guide are as follows:

  • 1
    Can you tell me about your feelings about the MRSA infection?
  • 2
    Can you describe your feelings when you were informed about the MRSA infection?
  • 3
    Can you describe if MRSA has affected your day-to-day life?

To test the validity of the interview guide, two pilot interviews were conducted (Kvale & Brinkmann 2009). Results showed that the format allowed relevant answers regarding the aim of the study. As the pilot interviews turned out well, they were included in the study (Trost 2005). Three interviews took place in the participant's home, the others in a secluded and quiet place at a hospital in Stockholm. All interviews were tape recorded with the permission of the participants and lasted between 13 and 55 min (mean 32 min).

Data analysis

The interviews were transcribed verbatim and analysed by qualitative content analysis.

As Patton (2002) states, ‘Content analysis requires considerably more than just reading to see what's there’ (p. 5). Data reduction allows the identification of core, consistencies and meaning (Patton 2002).

The first author (HA) listened to and read all of the interviews several times to obtain an impression of the entire material. The interviews were then read sentence by sentence. Meaning units that answered the questions of issue were marked, cut out and first sorted into content areas. Meaning units are words, sentences or paragraphs containing aspects related to each other through their content and context. Thereafter, the meaning units were condensed and abstracted and labelled with a code (Table 1). From this coding, preliminary categories and subcategories were created according to the procedure that constitutes the manifest content recommended by Graneheim and Lundman (2004). HA and one of the co-authors (BF) discussed the codes, subcategories and categories until a consensus was reached. Finally, the underlying meaning (i.e. the latent content) of the categories was formulated into a theme. Any remaining text was read through again to ensure that nothing important had been omitted or missed.

Table 1. Examples from the coding procedure
Meaning unitCondensed meaning unitCode
I thought about what he [physician] meant – I was infected and I got the feeling that I didn't wash myself properly. (Woman, 83 years)The physician gives the patient a feeling of dirtinessDirty
I thought that I shall infect whoever I come in contact with, I felt dirty. (Woman, 46 years)Patient felt dirtyDirty

Ethical consideration

The research ethics committee in Stockholm, Sweden approved the study (Dnr: 2005/416-31/3). All participants were informed that participation was voluntary, they could withdraw at any time and that data were confidential. They were assured that the recorded interviews would only be identifiable by the researcher.

Findings

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

After coding, three categories – each with a number of subcategories – and one theme emerged.

The theme was being exposed to others' shortcomings and being a threat to others' health.

The categories were understanding and emotional reactions, treatment by the healthcare professionals and consequences and expectations.

Understanding and emotional reactions

This described the participants' knowledge of MRSA and the feelings they experienced upon diagnosis. Four subcategories were identified: diverse reactions to the diagnosis, being a danger for others, unclear perception of the disease and fear for rejection.

Diverse reactions to the diagnosis

Upon receiving the initial information about MRSA diagnosis, emotional reactions varied from indifference to shock. Those who were ‘unaffected’ believed that MRSA was an overstated problem or that it would not harm them:

He, the MRSA doctor, informed me that it is not a deadly thing if you aren't a newborn child or so, so it was no problem for me. (Man, 22 years)

However, for many participants this was a traumatic experience and caused a shock-like psychological trauma:

I felt like I sank through the floor. So it felt terrible and horrible. (Woman, 72 years)

It was a shock, I became totally annihilated. (Woman, 29 years)

The participants compared the experience to having the plague or leprosy, expressing that they felt dirty and had become infected because they had not washed properly.

I was really in a panic; I felt like a leper. (Woman, 46 years)

Participants talked a great deal about their feelings of shame, and they felt sad. They also expressed concern and frustration as to how they became infected.

Being a danger for others

Amongst numerous other worries, the fear of infecting others dominated. Participants felt that they were a threat to their environment and were afraid of infecting someone else.

I felt I was a walking focus of infection and that I was very dangerous. (Woman, 46 years)

The feeling of being a danger to their children, grandchildren, friends or work colleagues was described as traumatic and causing anxiety.

I got the information and the day before we had met with our little grandchild. He always hugs me very hard when we meet, and he kisses me on the mouth. I couldn't sleep at all the night after I was told that I was so dangerous. (Woman, 83 years)

My little daughter, she is now 6 years old, usually comes and sleeps next to me during the night, and I read stories to her, and I brush her teeth, and I usually dress her and so, but in the beginning I did not dare to touch her. (Man, 43 years)

Unclear perception of the disease

While all participants knew that they had a communicable infection, it was apparent that their degree of knowledge about MRSA and its mode of transmission varied. Information had been obtained from their physician, MRSA infection control team, media and the Internet. Descriptions included:

  • 1
    ‘It's a kind of virus; you have it in your body, probably for the rest of your life.’
  • 2
    ‘It's some bacteria in your blood, and you can transmit it to others.’
  • 3
    ‘It's the killing disease.’

Some expressed insecurity regarding how to behave in different situations, for example:

If my young son gets a wound, what is the rule, do I put the plaster on then or . . . maybe not? If I am at home I must do it, but maybe I should wear gloves or something, I don't know. (Man, 43 years)

Fear for rejection

Participants were concerned that friends, co-workers and others would reject them; one declared that he would never tell anyone because of this risk. He also said that if his employer knew that he was infected, he was sure that he would lose his job.

Treatment by the healthcare professionals

Here, two subcategories emerged, which described participants' views of healthcare staff's knowledge of MRSA and their thoughts about how lack of knowledge could have effects on how they were treated. The subcategories were: experience of staff's lack of knowledge and blaming the healthcare workers.

Experience of staff's lack of knowledge

The participants observed a lack of staff knowledge in terms of actual MRSA infection, how it is spread, how to protect oneself and of existing guidelines. One participant, after receiving information from her GP, was so upset and scared that she did not go out for days. Fortunately, the MRSA infection control team was able to give her the correct advice.

Then he – the doctor told me – and he scared the life out of me. He said, ‘I will not shake your hand, you cannot travel by bus, you are not allowed to use the underground and you should not have anything to do with other people.’ It was horrible and I have some difficulties forgiving him. (Woman, 83 years)

Another participant, who believed her physician didn't know anything about MRSA explained:

The physician said it was MRSA, but I hardly know the names of those cocci that you can get. Then she gave me a booklet and asked me to go out and read it, and if I had any questions afterwards, I should come back in and raise them, but as I didn't know what it was, I had no questions, so I left. (Woman, 22 years)

The participants described how some staff seemed to think that MRSA was a blood-borne infection. For example, when a participant showed the MRSA card at the X-ray department:

I showed the card when I took an X-ray of my lungs. But you do not have to show that card here, they said, for it has nothing to do with any blood or syringes. (Woman, 72 years)

Blaming the healthcare workers

The participants noticed that staff seemed to lack proper knowledge about basic hygiene principles. Some noted that it was only after diagnosis of MRSA that staff began to use protective garments and gloves when they helped with personal hygiene or undertook wound care.

Some nurses had a protective apron, but some didn't; they just put on the gloves. I noticed it, but I was ashamed to ask, aren't you going to wear an apron, but then I thought they must know what they are doing, who am I to tell them how to perform their job? The doctor at the accident and emergency department never used protective clothing. (Woman, 29 years)

One participant expressed aggressiveness towards the healthcare services because of the infection and had thought of suing them.

Consequences and expectations

This category describes the participants' feelings and perceptions about living with MRSA and is divided into three subcategories: influence of the MRSA card, influence on daily living and perceptions about the future.

Influence of the MRSA card

Upon receiving the MRSA cards, reactions amongst participants varied. Some were unconcerned, stating ‘it is the law’; others were very upset.

It is that feeling again, that I have got the plague, that I am a danger to my surroundings. (Woman, 21 years)

I feel like a social outcast. (Man, 43 years)

Some had not yet been obliged to show the card and were worried and embarrassed about doing so.

You don't know how people will react to it. (Man, 57 years)

When you go for a massage, do you have to show the card then? It is quite hard, I intend to go to the dentist in December; must I tell him? How much does he know? (Woman, 29 years)

Influence on daily living

Some participants thought that MRSA had stopped them from doing things they liked to do, such as swimming, going to the spa or to other places with communal shower rooms:

There are limitations, no doubt. (Woman, 83 years)

Hygiene became a particular concern, with many changing towels and bed clothes almost on a daily basis, and when visiting friends they dried their hands on paper rather than a towel. Some were afraid of getting wounds, and were therefore cautious not to traumatize themselves. If they got a wound, they took great care of it.

Perceptions about the future

One participant described how her whole future was affected because she understood that there were jobs that she was not permitted to do such as working with children, with food, in health care or in restaurants. Other expressed fears of not receiving help if they became ill, or not receiving the proper treatment.

Some felt insecure about the future and some felt that it was just something they had to accept. Others said that they wanted to be optimistic and that they hoped for a cure. Some even expressed that this could be good for them, a new start in life.

Now I shall take care of my life, because I have never done that before. I have worked around the clock, never been sick. I have stopped smoking, I am not going to drink any alcohol, and I will be out exercising much more. (Man, 56 years)

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

The main findings of this study centred on the description of experiences of MRSA-positive patients from initial diagnosis, through to how being branded as a carrier influenced and affected their life situation and what they thought about the future. Numerous patients throughout the world will suffer from the effects of being contaminated. This study has ascertained that for a majority of patients diagnosed with MRSA, this is a traumatic experience and that staff needs to be well informed about the condition and guidelines for its management in order to instil confidence in patients, but also to prevent spread of resistant micro-organisms. There is, however, a lack of international consensus on how to handle MRSA-infected persons. In a small country like Sweden (approximately 10 million inhabitants), we have not succeeded in developing rules and regulations for the entire country. In a previous study (Andersson et al. 2009), we observed that most of the 21 county councils in Sweden have different guidelines regarding MRSA.

Some participants were shocked when the diagnosis was communicated, expressing feelings of shame, dirtiness or that they were a threat to other people. Similar reactions have been described by HIV-infected persons on receiving their diagnosis (Stevens & Hildebrandt 2006). The participants in the present study expressed similarities between MRSA infection and having the plague or leprosy in accordance with results from a previous study of MRSA-infected patients placed in source isolation (Newton et al. 2001). For some, this anxiety resulted in somatic symptoms such as insomnia or general –‘existential’– anxiety. Fear of infecting significant others was a major concern: a similar finding was reported by Donaldson et al. (2007) and Lindberg et al. (2009).

Previous knowledge and understanding of a disease will also influence reaction to a diagnosis. That media can influence perception and understanding of a disease was shown in a study of HIV/AIDS patients by Coppola and Camus (2007). Gill et al. (2006) showed that the most common sources of information about MRSA for patients were newspapers and television. An examination of the English Newspaper Index 1998–1999 identified 28 papers concerning MRSA, of which 25 used the term ‘superbugs’ to describe MRSA (Hamour et al. 2003).

Staff's behaviour and how they express themselves also affect the patients' experiences. As Criddle and Potter (2006) reported, patients who receive poor information will be confused and anxious. While those in this study had met the specialists from the MRSA control team and should have received all appropriate information, it was obvious that they had still misunderstood numerous aspects of MRSA, such as MRSA being caused by a virus, being blood-borne or ‘the killing disease’. This perhaps demonstrates the difficulties in understanding and integrating healthcare information (Newton et al. 2001). Alternative educational methods might have to be developed.

The participants sometimes felt that the staff did not have enough knowledge about MRSA, particularly with regard to guidelines, and that in some cases they felt better informed than the staff. They described the lack of compliance with basic hygienic principles, reflecting the findings of an observational study where in 488 observations, compliance was found to be only 28% (Afif et al. 2002). Unfortunately, participants, particularly the older ones, did not dare to point out such non-compliance by the staff (Duncan & Dealey 2007). Although only one expressed anger towards the staff about the infection, the responses indicated a degree of disappointment with the healthcare services. Major changes in daily life were reported: some activities were discontinued, and for a majority, fear of rejection by friends and relatives, of losing their jobs and of not having access to accurate healthcare was common.

Methodological considerations

Two pilot interviews were performed to test if the interview guide captured the potential theme and responded to the aim of the study. In one case, the interview lasted for only 13 min as the interviewee was very uncommunicative. The fact that the interviewer was a nurse working in a department of infectious diseases might have been a limitation but could also be a strength. The participants might, however, be hesitant to complain or to be critical about staff and the healthcare delivery.

Content analysis, the method of data analysis in the present study, was previously developed in order to handle large amounts of text data and was used as a quantitative method in mainly media research and theology. Recently, content analysis has become a common qualitative method in nursing science, because it is a pragmatic method. Some nursing theorists, like Graneheim and Lundman (2004) and Patton (2002) have explained how to use the method through examples in nursing sciences. Textual information from interviews, focus groups and open-ended survey questions can be analysed by content analysis.

According to Graneheim and Lundman (2004), a rich and vigorous presentation of the findings together with appropriate quotations can enhance transferability. The findings provide a broader understanding of MRSA-positive persons' situation and their combined perception and experiences, and perhaps this can improve our understanding of other patients in similar situations. Further studies of staff's knowledge about MRSA and compliance regarding guidelines would be of interest.

Conclusions and implications for practice

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

Antibiotic-resistant bacteria such as methicillin-resistant S. aureus are an urgent global problem. Over- and misuse of antibiotics contributes to its development and spread and is common in many countries.

MRSA can be spread by staff and it is a responsibility of all healthcare workers to obtain knowledge regarding basic principles for infection control in order to prevent spread of MRSA and other potentially pathogenic micro-organisms.

Being contaminated with MRSA was often subjectively experienced as an individual disaster and placed a heavy burden on people, illustrated by the participants in the present study. They felt contaminated and dirty, and feared that they could infect other people.

Lack of knowledge and improper and misleading information both by staff and patients can have fatal consequences for the patients and their loved ones and cause fear and isolation.

Correct information about MRSA and its mechanisms for spread has the potential of minimizing the detrimental effects for the patients. Nurses around the world have a central role in the education of staff, patients and family members.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

The authors express their grateful thanks and appreciation to the individuals who participated in this study. We also wish to thank RN Roisin Petrini and Ms. Deborah Glover for professional contributions regarding the English language. This work was supported by a grant from Sophiahemmet University College, Stockholm, Sweden.

Author contributions

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References

Study conception/design: HA, CL, BF.

Data collection: HA.

Analysis: HA, BF.

Drafting of manuscript: HA, CL, BF.

Critical revisions for important intellectual content: CL, BF.

Supervision: CL, BF.

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  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Methods
  6. Findings
  7. Discussion
  8. Conclusions and implications for practice
  9. Acknowledgements
  10. Author contributions
  11. References
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