Outcasts: HAIs Stigmatize Discharged Patients
Those with infection or colonization fear for friends and family
October 1st, 2018
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By Gary Evans, Medical Writer
Some patients infected or colonized with MRSA and other multidrug-resistant organisms (MDROs) report feeling stigmatized, comparing their plight to historical outcasts like lepers and plague victims.
A meta-analysis1 that looked at the emotional toll on patients after discharge revealed that for some, a hospital-associated infection (HAI) is more of a life event than a medical one.
“They feel blamed for having the infection. They feel ‘dirty’ and worry about being contagious and transmitting infection, particularly to family members,” says Kay Currie, PhD, lead author of the multinational study and a researcher at Glasgow Caledonian University in Scotland. However, Currie found that patients who consulted with an infection preventionist prior to discharge were less likely to feel stigmatized, in part because they received clear information about their condition and an accurate assessment of the risks to others.
While that certainly validates the IP role, the more striking finding is the depth of stigma and shame some patients feel in the aftermath of an HAI.
“This is the first meta-analysis like this I have seen,” says Karen Hoffmann, RN, MS, CIC, FSHEA, FAPIC, president elect of the Association for Professionals in Infection Control and Epidemiology.
The findings really underscore the positive effect of infection preventionists, she emphasizes, noting that the study is particularly timely because MDROs are on the increase. More research is needed to determine what exactly the interventions would be, but this study clearly points to the need for staff and patient education to address these concerns, she notes.
In an international analysis that included studies performed in the United States, Currie and colleagues describe the social and psychological aftermath of infections that go well beyond the clinical aspects of disease. Stigma was most pronounced in those with MRSA but also was found for those with Clostridium difficile, extended-spectrum Beta-lactamases (ESBL), and surgical site infections (SSIs).
Though references to the plague may seem melodramatic to clinicians, it is striking that HAI patients compared their plight to a contagion marked by profound fear in the Middle Ages.
“Patients were unsure whether or not to disclose their MRSA status to others, for fear of being rejected, either within their family or at work,” Currie and colleagues report.1 “Some patients, primarily those colonized with MRSA, reported being excluded or distanced by family members.”
Patients with C. diff tended to avoid social and family interactions, citing fear of transmission and of experiencing the social embarrassment of gastrointestinal symptoms, she says.
“C. diff patients were concerned about the social aspects of profuse, uncontrollable diarrhea,” Currie says. “They were not sociable but did not have the same extent of feeling of stigma as those with MDROs.”
Ironically, asymptomatic patients colonized with MRSA found the infection control precautions they experienced all the more jarring. The lack of symptoms “made it difficult for them to accept there was anything wrong or to understand the need for measures to manage MRSA colonization, particularly after discharge,” the authors report.
On the other hand, patients with SSIs reported bad-looking “wounds” that prompted reactions from family and friends. “Negative impact on sexual relationships was also mentioned, particularly in relation to CDI,” the authors report. “Therefore, all forms of HAI led to adverse consequences on patients’ social lives and relationships.”
For example, Currie and colleagues report that patients with SSIs described “an unfolding situation, often initiated by extreme and sudden pain and profuse wound leakage. [They] had to deal with significant physical and emotional distress while seeking an explanation of their symptoms.”
Recurrent UTIs were reported by some of the patients infected with ESBL-producing bacteria. In a gender-related finding for ESBL, women expressed greater guilt and anxiety about possible transmission. Men, on the other hand, were angry and irritated about unanswered questions and poor information regarding their condition.
“The emotional and physical responses of patients experiencing an HAI can be conceptualized as existing at varying points on a continuum from minimal to extreme distress,” the authors note. “Some patients experienced significant physical symptoms. [Others] demonstrated significant emotional distress.”
Those two conditions are not mutually exclusive, as both pain and stigma can result from an HAI. Again, patients’ feelings of fear and stigma were mitigated if they were able consult with an IP or infectious disease clinician before discharge.
“We also know that the availability of infection preventionists is variable by different hospitals,” Currie says. “In some settings, there are not enough infection preventionists to do all of the IP work. It is a resource issue, but they certainly can have a beneficial impact on patient experience.”
This goes to the point of a recent study2 that found that many infection control programs are understaffed. The result is that IPs spend precious time on surveillance and data-crunching and too little time on patient interaction and worker education. (See related story, page 112.)
‘I think this is a huge frustration for infection preventionists,” says Rebecca Bartles, MPH, CIC, FAPIC, lead author of the staffing study.2 “We know we are the most valuable when we are interacting with caregivers.”
In the HAI stigma study, researchers analyzed data from 17 studies in five countries from 2001-2017. This included six studies in the U.S, with the remainder in Sweden, the United Kingdom, and France. The data were gleaned for qualitative research reflecting the patient experience.
The researchers found that HAIs have developed a negative social and cultural context, with MRSA and other superbugs portrayed in the media as coming from dirty hospitals with poor staff hygiene practices.
The threat of transmission of these pathogens often is exaggerated in the lay press, with gruesome characteristics like “flesh-eating” bacteria becoming a darling of the tabloids.
“In comparison with many other medical conditions, ‘having an infection’ provoked responses in the patient, their family, and clinical staff that were shaped by social norms and expectations of the person ‘being clean’ versus ‘feeling dirty,’” Currie reported. “These interactions between patient and others usually took place in a climate characterized by induced fear and uncertainty, where limited understanding of risk and appropriate risk-reducing behavior was constrained by lack of information and knowledge.” Alarmingly, some of these feelings began during hospital care and continued during follow-up visits, as patients had little confidence in frontline healthcare workers.
“We had the sense the patients had the feeling that the ward-based staff didn’t understand the infections,” Currie says. “They could not give the patients appropriate information. Sometimes staff overreacted and made patients feel stigmatized. There is definitely a need for better education and availability of current information for healthcare staff and patients.”
As IPs are aware, the psychological impact of HAIs can begin when patients with an MDRO are placed in contact precautions. Some isolated patients in the stigma study reported erratic use of PPE in contact isolation, experiencing both overkill and noncompliance.
“It is very confusing,” Currie says. “We found this in some of the studies we looked at and also in some of our recent patient experiences with PPE. They were getting different information from different staff. Some staff were uncertain about the correct PPE. The patients did not have a great deal of confidence in the staff.”
Thus, the reassurance and competence of IP consultations contrasts with the patient experience with frontline caregivers.
“IPs deal with HAIs and [infected] patients all the time,” she says. “Ward staff may not necessarily see patients with HAIs that regularly. It is not something they are dealing with on a daily basis, so rapid access on the hospital intranet to best practice guidelines that can also be shared with patients can be very helpful. This lack of continuity of care can have an adverse effect on patients.”
Some patients with SSIs complained of not being taken seriously, feeling healthcare workers were dismissive of their symptoms. Stigmatization was further reinforced in some patients returning for follow-up care.
Some were barred from rehabilitation classes, had to schedule clinic visits near closing time, or had homecare visits with caregivers in PPE.
In the absence of better patient education or IP consultation, many carry over infection control precautions from hospital to home.
“When they are discharged home, they are still taking precautions and are very concerned about being back in the community,” Currie says.
“The risk to these people is minimal. Some may have been colonized with these organisms for years, not known about it, and never had any adverse consequences. Now they have been told they can be contagious as they are discharged home.”
The result for some is anxiety and rumination, though the likelihood of infecting healthy people in the community is very low compared to transmission to frail patients in a hospital. “One of the messages to come through from this review is that what is done in the hospital does not necessarily need to continue once a patient is at home,” Currie says.
“Patients are not getting appropriate information about how to act and respond once they are back home. So, they continue excessive precautions and are worried about transmission.”
- Currie K, Melone L, Stewart S, et al. Understanding the patient experience of health care-associated infection: A qualitative systematic review. Am J Infect Control 2018;46(8):936-942.
- Bartles R, Dickson A, Babade O. A systematic approach to quantifying infection prevention staffing and coverage needs. Am J Infect Control 2018;46(5):487–491.
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