Overcoming stigma and discrimination in pursuit of reducing antimicrobial resistance: a Swedish approach
18 November 2024
“Stigma that evolves from a bacterial threat, often without symptoms, is difficult to understand. Poor or mixed information can lead to uncertainty for people when making contact with the health-care system and in their social life,” says Dr Gudrun Lindh, a retired infectious disease specialist, PhD and senior consultant from the Department of Infectious Diseases at the Karolinska University Hospital and Karolinska Institutet in Stockholm, Sweden. Dr Lindh’s passion for epidemiology led to her work addressing antimicrobial resistance (AMR), including the social and mental health impacts of methicillin-resistant Staphylococcus aureus (MRSA).
MRSA is a common type of Staphylococcus bacteria that can be resistant to several antibiotics. These bacteria spread in the community through contact with people infected with MRSA and their wounds, or through contact with contaminated materials. MRSA maintains its position in the WHO Bacterial Priority Pathogens List for high-priority pathogens. Anyone can become infected with MRSA or carry MRSA without showing any signs or symptoms. The risk for acquiring MRSA increases for people receiving medical care in hospitals or long-term care facilities.
Since 2000, an MRSA infection is a mandatory notifiable disease under Sweden’s Communicable Disease Act and classified as a disease that poses a threat to public health. An MRSA diagnosis in Sweden used to be considered a lifelong infection, entered with a warning symbol in the patient’s medical record. Inadequate knowledge about MRSA among patients, health-care workers and the public meant that stigma and discrimination became a common experience for many, including those who were only carriers without any manifestation of an infectious disease. Previously healthy children who were identified as MRSA carriers without any apparent risk factors were also stigmatized.
Stigma in the context of MRSA
In the Stockholm region, the Chief Medical Officer initiated an MRSA care programme, which detected a five-fold increase in cases between 2000 and 2011 (from 5 to 24 cases per 100 000 persons), giving rise to unforeseen challenges in the health-care system and community.
The first years of monitoring MRSA revealed a widespread lack of knowledge among health-care workers and patients about these bacteria, as well as lack of adequate hygiene measures and associated consequences in health-care settings. Managing MRSA in outpatient departments was initially regarded as a low-priority task and was not well understood. Problems also occurred in schools, where teachers were sometimes unnecessarily notified about a child’s MRSA diagnosis and/or felt afraid as they did not understand what it meant to be a carrier of MRSA.
Transmission in the Stockholm region initially occurred mainly in health-care facilities, but subsequently shifted towards community-acquired infections, similar to the patterns observed in other countries. In school settings, some children with functional impairments, who were diagnosed as MRSA carriers, were denied permission to return to school, and parents needed extra support to tackle this challenge. These negative experiences and behaviours show that the risk of infection must be appropriately understood, and neither ignored nor exaggerated. It is equally important to implement infection prevention and control (IPC) measures.
Self-stigma and emotional well-being
“Research has taught us that people’s understanding and perceptions of having MRSA were related both to their quality of life and experience of stigma,” explains Dr Lars E. Eriksson, a professor of nursing at the Department of Neurobiology, Care Sciences and Society at Karolinska Institutet in Sweden and the School of Health and Psychological Sciences at City St George’s, University of London in the United Kingdom.
“In Sweden, we saw parallels to the stigmatization and discrimination suffered by people living with HIV in the early years of the HIV/AIDS pandemic,” Dr Eriksson continues. “Our learning from other stigmatizing conditions shows there is a relationship between self-stigma and emotional well-being that underpins the importance of improving knowledge and awareness among health-care workers and patients to prevent self-blame and other negative attitudes towards the self that can develop among those living with MRSA or other AMR pathogens.”
“Some people diagnosed with MRSA isolated themselves from their families,” recalls Dr Lindh. “Many experienced limitations in everyday life – some felt unclean and were extremely adherent to the rules. They also questioned the requirement to inform care personnel about their MRSA status and sometimes found that they had more knowledge about the condition than their health-care providers. Some health-care workers were even afraid to touch the patients and preferred to stay outside the examination room, which resulted in inadequate care, while patients diagnosed with MRSA wished to be rid of what they perceived to be an unclean plague stamp.”
Efforts to “undiagnose” MRSA
A programme supported with grants from Stockholm County Council was initiated in 2009 with the aim of “undiagnosing” MRSA carriers without symptoms and improving knowledge and awareness among health-care workers and patients. This entailed a follow-up of people diagnosed before 2009 and following new MRSA cases prospectively from 2009 to 2011. An MRSA non-carrier was defined as such after having at least 3 consecutive negative bacteria culture samples for 12–18 months and no risk factors. The results of the programme helped to unregister 30% of patients in the retrospective group and 56% in the prospective group. Remarkably, only 21% of patients received antibiotics for the treatment of MRSA. This marked the start of a new era and came as a big relief for patients and care providers.
Over 4349 people were diagnosed as non-carriers in the years 2010–2022. Nowadays, only 2 negative culture samples, at least 3 months apart, are needed for people with no risk factors for a non-carrier diagnosis. The lesson learned is that MRSA bacteria can disappear. Moreover, new cases are referred to a dedicated MRSA team with clear roles, responsibilities and a systematic process. Health-care workers have improved their knowledge through training, consultations and education seminars, leading to better-informed and confident health-care personnel and more satisfied patients.
In the community, children who were diagnosed with MRSA can continue to attend preschool and school and participate in all activities, provided that parents and children comply with the rules of conduct. Parents are not required to notify the school if there are no risk factors. The revisions and improvements in MRSA screening are aligned with the mandate of the Swedish Strategic Programme for the Rational Use of Antimicrobial Agents and Surveillance of Resistance, launched in 2008, which remains an important and successful national working model for knowledge management to address AMR in health care.
Educate. Advocate. Act now.
Dr Lindh emphasizes that knowledge is often a “fresh product” and must be continuously renewed as stigma still exists for MRSA carriers, especially among those not well informed, sometimes due to language barriers. To prevent further stigmatization, Dr Lindh advocates for public awareness on MRSA infection and insists that this needs to be balanced with information about how MRSA is usually curable and how transmission can be prevented through simple measures such as hand hygiene.
Addressing the impact of stigma in the context of AMR calls for a people-centred approach that recognizes the central role of people and communities in tackling AMR, and in helping to address weaknesses and gaps in current AMR efforts. The Roadmap on antimicrobial resistance for the WHO European Region 2023–2030 acknowledges that AMR is a major threat across people’s life course, including their living and working conditions. It has the potential to compromise quality of care and patient safety across the continuum of care. People-centredness recognizes and seeks to empower people as partners in controlling AMR, and entails a fundamental shift in the way health systems are set up.
“Health-care-associated infections and community-acquired infections caused by MRSA or any infectious agent should be as close to zero as possible. All health and social care personnel must apply adequate IPC measures where health and social care is provided, irrespective of the care provider and type of care and whether the patient and/or care recipient is known to have an infection. Hence, all care providers must ensure that the staff and health-care workers have knowledge of and apply standard precautions of IPC practices while delivering care to all patients, at all times, in all settings. Doctors and nurses play an important role in reinforcing adequate IPC measures. Guidelines should be evidence-based and regularly revised,” urges Dr Lindh.
IPC is a practical, evidence-based approach to prevent avoidable infections, including those caused by resistant pathogens. WHO/Europe supports Member States to reduce AMR through strengthening IPC measures, such as effective hand hygiene, application of standard and transmission-based precautions, along with environmental cleaning and disinfection in all settings providing health care. A core function of guiding national IPC programmes is to deliver IPC training to the entire health workforce at all levels of care, building the skills and competence necessary to support health-care workers in a collective effort to decrease the spread of AMR pathogens and to help to tackle the stigma attached to being a carrier of those pathogens.
World AMR Awareness Week
World AMR Awareness Week (WAAW) is a global campaign to raise awareness and understanding of AMR and promote best practices among all stakeholders, including the public, to reduce the emergence and spread of drug-resistant infections. WAAW is celebrated every year on 18–24 November. The theme for WAAW 2024 is “Educate. Advocate. Act now.”, calling on the global community to educate stakeholders on AMR, advocate for bold commitments, and take concrete actions in response to AMR. WHO/Europe works with countries to improve awareness and understanding of AMR and achieve necessary behavioural change through campaigns, education and training at all levels and including all of society.
AMR is responsible for 133 000 deaths each year in the WHO European Region, and is costing countries of the European Union and European Economic Area an estimated €11.7 billion annually. Urgent action on AMR is required to improve health and save lives. As we have learned from the example of Sweden, much more can and must be done to bring attention to the damaging effects of stigma on health systems, communities and people’s mental health and well-being.
WHO Media Team
World Health Organization
Email: mediainquiries@who.in
Source: World Health Organization (WHO)
https://www.who.int/europe/news-room/feature-stories/item/overcoming-stigma-and-discrimination-in-pursuit-of-reducing-antimicrobial-resistance--a-swedish-approach
For more HIV and AIDS News visit...
Positively Positive - Living with HIV/AIDS:
HIV/AIDS News
|
