One of the first studies in the UK into what life is like for people living with antibiotic resistant infections has revealed new ways that could help support those living with debilitating conditions.
The research led by Dr Ryan Hamilton, Associate Professor of Antimicrobials at De Montfort University, Leicester (DMU) is the first of its kind to provide a comprehensive understanding of the long-term impact of Antimicrobial Resistance (AMR) upon people’s daily lives, particularly on the wellbeing of individuals and the support they need from healthcare professionals.
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The resulting paper makes a number of recommendations, including the urgent provision of detailed information about AMR, its management and prevention, to patients at the point of diagnosis.
The work was carried out in partnership with Antibiotic Research UK, the charity tackling bacterial antibiotic resistance and the findings have been published by eminent scientific journal Nature Scientific Reports.
Dr Hamilton, said: “Our research shows that people living with drug-resistant infections are not receiving the information and support they need from clinicians and healthcare providers and in our paper we have made a number of recommendations to this effect.
“Much more needs to be done to provide accessible and understandable information to people diagnosed with drug-resistant infections, or carrying a drug-resistant microorganism long-term, at the point of diagnosis.
“There is a significant lack of structured support for these people, the abandonment and isolation they feel because of lack of information and support from healthcare, and also a lack of support and understanding from friends and family – unlike for cancer, diabetes, and respiratory disease for example; even though antibiotic resistance is already negatively impacting people with these conditions too.”
The research examined, in-depth, the lives of nine participants who had been living with resistant infections or colonisation for over 12 months, with a central aim to find out the key elements of experience and support needed for those living with AMR in the UK. According to a recent Government report, around 150 people are diagnosed with AMR every day nationwide.
Consistent findings throughout the study uncovered a lack of support and guidance for those diagnosed with AMR infections and chronic colonisation with a long-term negative impact on health and wellbeing- reinforcing the necessity for professional, reliable, and accessible information at the time of diagnosis - and readily available outside of healthcare settings.
Jonathan Pearce, Chief Executive Officer of Antibiotic Research UK, said: “As we’ve known from Antibiotic Research UK’s own award-winning Patient Support Service, there is an urgent need for professional and reliable information to be available outside of core healthcare services, particularly through support groups and peer networks.
“More research is needed into the information and advice currently provided, as well as a focus on the impact and support needs of people living with antibiotic-resistant infections and those that care for them.”
Key Findings from the research, include:
- Marginalisation and Empowerment: Participants described a complex experience marked by marginalisation and isolation, but also moments of empowerment. Three major themes emerged: (a) Living in fear and stigma, (b) Battling on their own: A journey toward self-advocacy, and (c) Sharing their stories: The role of AMR in communities.
- Support Gaps: Participants reported a lack of knowledge, information, and support from clinicians, difficulties in accessing reliable information, and a lack of understanding from family and friends. Charities and online groups emerged as crucial sources of support, addressing not only medical concerns but also mental-health and wellbeing.
- Urgent Need for Information: The study emphasises the urgent need for understandable and relatable information regarding the science of AMR, transmission, prevention, and living with AMR to be provided by clinicians and healthcare services around the time of diagnosis.
- Support Services: Professional and reliable information should be available outside healthcare services, particularly through support groups provided by professionals. There is a call for more research into the impact and support needs of those with asymptomatic colonisation.
Posted on Tuesday 13 February 2024