Abstract
Aim
Research suggests that early access to quality care is essential to improving bacteraemia outcomes and reducing the risk of developing sepsis because it allows for early intervention. Currently, there are limited data regarding the facilitators and barriers that alter the trajectory of arrival at the hospital when patients in the United States experience symptoms of bacteraemia and sepsis. This study sought to explore and describe the facilitators and barriers to seeking care for suspected bacteraemia and sepsis symptoms.
Design
A qualitative descriptive study.
Methods
Ten men and women were recruited using convenience sampling. The study used audio‐recorded semi‐structured interviews and the collection of socio‐demographic data as the data collection techniques. Thematic analysis was used, including inductive and deductive approaches, to analyse the data.
Results
During data analysis, the codes related to barriers and facilitators were collapsed into three themes—symptom recognition, psychosocial support and healthcare planning and coordination.
Patient Contribution
The patients' participation in the study has contributed to our understanding of patients' perspectives and experiences in the pre‐hospital phase and provides important insights into what barriers and facilitators are encountered. Study findings highlight the need to develop interventions to improve patient decision time, patient–provider interactions and knowledge of bacteraemia and sepsis through patient and provider education.
Keywords: bacteraemia, barriers, facilitators, infection, qualitative study, sepsis
1. INTRODUCTION
Early access to quality care is essential to improving bacteraemia outcomes and reducing the risk of developing sepsis because it allows for early intervention (Aboud et al., 2017; Bogale et al., 2017; Launay et al., 2014). A recent study evaluating the association between the timing of the administration of antibiotics and mortality among patients with sepsis found that each hour of delay in antibiotic therapy increases mortality by 9% (Liu et al., 2017). Therefore, timely and quality sepsis care depends on effective preventive interventions and early recognition and treatment (Guery & Calandra, 2019). Patients who experience delays in the start of treatment for sepsis are at high risk of complications, including but not limited to organ failure, metastatic infections, and death (Fay et al., 2020). Healthy People 2030 (HP2030) has identified barriers to access to health care (HP2030, n.d.). Access to health care is crucial because it impacts individuals' overall physical, social, and mental health, thereby impacting their quality of life (Ruffin et al., 2023).
Furthermore, HP2030 focuses on improving health by encouraging people to get timely, high‐quality care. Barriers and facilitators to bacterial sepsis care are related to meeting socio‐cultural, financial and structural needs (Ruffin et al., 2023). HP2030 also focuses on increasing social and community support because people's relationships and interactions with family, friends and co‐workers significantly impact their health. The essential resources provided by HP2030 can guide interventions to improve community support related to the prevention and management of bacterial sepsis.
Several international researchers have proposed many reasons why patients delay seeking help for bacterial infections and sepsis symptoms. One of the main reasons is an unawareness of sepsis's danger signs and risks (Aboud et al., 2017; Clarke et al., 2015). In addition, some patients have concerns about lack of financial means or insurance, lack of transportation to the hospital and perceived poor quality of care that they may receive at the hospital (Aboud et al., 2017; Baghdadi et al., 2018; Bogale et al., 2017; Charlet et al., 2017; Herdman et al., 2016). Still, others delay seeking care at the hospital because they include family members in decision making or seek care from informal practitioners rather than qualified healthcare providers (Aboud et al., 2017; Clarke et al., 2015; Herdman et al., 2016). Often, friends, family members and informal care providers are the preferred sources of help over healthcare professionals (Aboud et al., 2017; Clarke et al., 2015).
In a qualitative study of help seeking in patients with neutropenic sepsis (NS), Clarke et al. (2015) identified several barriers to care seeking, including inconsistencies in the information patients sometimes received relative to the urgency of the symptoms. This study showed that sometimes the doctor might be unable to associate mild symptoms as being associated with NS and dismiss patients without treatment. Furthermore, the researchers found that patients sometimes denied their symptoms and delayed seeking help because they wanted to avoid hospitalization. Clarke et al., 2015 also found that patients' emotional reactions to the illness (e.g. fear or anxiety) resulted in delays in help seeking. Finally, they found that social factors such as competing priorities of work or caring responsibilities are barriers to early help seeking. Removing potential barriers will support the patient in identifying appropriate medical care providers and seeking advice from qualified sources.
Conversely, researchers have proposed facilitators for seeking early sepsis treatment, including community interventions emphasizing the danger signs of sepsis and the risk of sepsis (Aboud et al., 2017; Charlet et al., 2017). Additionally, the availability of call centres that organize reliable and affordable transportation to a health facility where the patients can receive quality care with medications for sepsis and someone is available to help navigate the hospital can facilitate the help‐seeking process (Aboud et al., 2017; Herdman et al., 2016). Herdman et al. (2016) identified several possible facilitators of help seeking. These included providing information to patients and informal providers about recognizing the warning signs of sepsis to prompt referral to a qualified doctor or hospital. According to Herdman et al., to address the cost associated with the treatment of the illness, more education is needed for patients about their rights to free medications and services, as well as insurance options for the poor. Herdman et al. (2016) and Clarke et al. (2015) found that providers need more knowledge about the immediate management of acute febrile illness and sepsis, which will provide them with the knowledge to advise and care for the patients. A recent study found deficits in nurses' knowledge of nursing surveillance of patients with sepsis and the implementation of sepsis bundles (LeBlanc et al., 2022). The findings of this study underscore the benefit of competency‐based education to improve outcomes.
Additionally, long‐term social change can address the effects of poverty on the help‐seeking process related to living standards, education, and management of chronic health (Herdman et al., 2016). Herdman et al. (2016) maintained that individual psychological and social factors, such as contextualized messages that reinforce the threat of sepsis and the need for skilled care, could facilitate the multi‐step help‐seeking process. The process begins when the patient becomes aware of the severe illness and the need for professional help.
More studies are needed to describe the events at each stage in the illness process to better understand the impact of pre‐hospital patient delay. This knowledge will enable researchers to develop interventions based on the barriers and facilitators contributing to speedy or slow decision making in each stage. An individual's experience of symptoms and their active efforts to cope with disease and disease threats are directly linked to delays in seeking care.
Despite increasing recognition of the benefits of early goal‐directed therapy, there remains a considerable delay between symptom onset and the start of antibiotic treatment (Guery & Calandra, 2019) and hospitalization for sepsis (Liu et al., 2018). Many patients miss the therapeutic window because they delay seeking help for their symptoms. To date, limited research exists exploring the perceptions of patients who delay seeking care for symptoms of sepsis. Few studies have been found that describe the phenomenon of delays in help seeking as it relates to patients diagnosed with bloodstream infection and sepsis (Clarke et al., 2015; Ruffin et al., 2023).
The Theoretical Domains Framework (TDF) was used to identify and explore barriers and facilitators to early care seeking because TDF has been used to support intervention design. The 14 domains of the TDF have been described in the literature (Atkins et al., 2017). TDF can not only be used to understand barriers and facilitators, but it can be used to discover modifiable factors to address that will enable the development of interventions designed to reduce delays in care seeking.
2. THE STUDY
2.1. Purpose
This qualitative descriptive study aimed to explore and describe the facilitators and barriers to seeking care for symptoms of suspected sepsis. The research question guiding the analysis was: ‘What barriers and facilitators are encountered in the help‐seeking process for patients with sepsis who delayed seeking care for >24 h from the onset of symptoms?’
3. METHODS
3.1. Design
This inquiry reports on a qualitative descriptive study that is part of a larger project exploring the perceptions and experiences of patients who delayed seeking help for symptoms of bacteraemia and sepsis. This article is a report of interview data that emerged about the barriers and facilitators to help seeking. Other project data are reported elsewhere (Ruffin et al., 2023).
3.2. Participants
Participants were eligible for the study if they were more than 18 years old and were former patients in the Southeastern United States hospitalized for the treatment of non‐healthcare‐associated community‐acquired (NHCA) and healthcare‐associated community‐acquired (HCA) bloodstream infections and sepsis within the prior 6 months and delayed seeking care at least 24 h from the onset of symptoms. The main exclusion criteria were non‐English speaking, mental status changes and hospital‐acquired infection diagnosis.
3.3. Data collection
Semi‐structured interviews were conducted to understand the barriers and facilitators encountered in accessing care for symptoms of bacterial sepsis. A researcher‐created demographic form was also completed. Interviews were recorded, transcribed verbatim, and de‐identified. Participants included a convenience sample of a diverse group of English‐speaking men and women who were former patients treated for bloodstream infection and sepsis at a University Medical Center. Participants were contacted via telephone no more than 6 months following bloodstream infection diagnosis to determine eligibility and obtain consent.
3.4. Data analysis
The data were uploaded into NVivo 12 (QSR International‐Melbourne) for qualitative analysis. The first author coded each interview using a priori and emergent codes. The trustworthiness or dependability of data collection methods and analyses were addressed using audit trails and confirmation of coding and analysis by an experienced qualitative researcher.
Socio‐demographic and clinical characteristics were summarized using means and frequency counts (see Table 1). Two levels of coding were used. The first author coded each interview using the identified a priori codes. Then, new codes or categories were coded as a sub‐category of one of the existing codes (Sandelowski, 2010). Next, directed content analysis was used to capture the themes based on the broader topical areas from the interview guide.
TABLE 1.
Socio‐demographic and clinical characteristics of the sample (N = 10).
| Male | Female | Total | |
|---|---|---|---|
| Age | |||
| Average age (years) | 62.8 | 54.7 | 57.9 |
| Age range (years) | 55–73 | 34–65 | 34–73 |
| Race | 4 | 6 | 10 |
| Caucasian/White | 1 | 4 | 5 |
| African American/Black | 3 | 1 | 4 |
| American Indian/White | 0 | 1 | 1 |
| Relationship status | |||
| Married | 3 | 2 | 5 |
| Separated/divorce | 1 | 3 | 4 |
| Widowed | 0 | 1 | 1 |
| Educational level | |||
| Did not complete high school | 1 | 1 | 2 |
| High school graduate | 1 | 0 | 1 |
| Some college/associate's degree | 0 | 3 | 3 |
| Bachelor's degree | 2 | 2 | 4 |
| Employment status | |||
| Employed full‐time | 0 | 1 | 1 |
| Unemployed, disabled | 2 | 4 | 6 |
| Unemployed, retired | 2 | 1 | 3 |
| Annual household income | |||
| <$20,000 | 1 | 0 | 1 |
| $20,000–39,999 | 2 | 4 | 6 |
| $40,000–59,999 | 0 | 1 | 1 |
| >$60,000 | 1 | 1 | 2 |
| Insurance status | |||
| Medicare and private | 2 | 0 | 2 |
| Medicare | 1 | 3 | 4 |
| Private | 0 | 2 | 2 |
| Medicaid | 1 | 1 | 2 |
| Infection type | |||
| Escherichia coli | 2 | 2 | 4 |
| Klebsiella pneumoniae | 0 | 1 | 1 |
| Staphylococcus aureus | 2 | 3 | 5 |
| Previous bloodstream infection | |||
| Yes | 2 | 3 | 5 |
| No | 2 | 3 | 5 |
| Approximate time between discharge and interview date | |||
| Less than 1 month | 0 | 1 | 1 |
| 2 months | 1 | 0 | 1 |
| 3 months | 2 | 1 | 3 |
| 4 months | 1 | 3 | 4 |
| 5 months | 0 | 1 | 1 |
3.5. Rigour
Rigour was established as described by Sandelowski (2010). Analysis continued until thematic saturation was achieved with the sample (i.e. no new dimensions emerged from the data; Sandelowski, 2008). To ensure the credibility of the research data, the principal investigator (PI) for this study maintained an audit trail of recordings, transcripts, coding and analytic decisions, study protocol and interview guides (Ruffin et al., 2023). In addition, the PI provided the audit trail to the third author, an expert in qualitative research, to verify data codes and themes. Transferability was ensured by using field notes and memos (Ruffin et al., 2023).
3.6. Ethical issues
The Institutional Review Board (IRB) where the study was conducted granted research ethics committee approval. Prior to the interviews, participants provided verbal informed consent. Transcripts were de‐identified to protect the participants' privacy.
4. RESULTS
4.1. Participant characteristics
Patient characteristics have been described previously (Ruffin et al., 2023). In summary, a total of four males and six females participated in the interviews, which lasted an average of 64.6 min, and ranged from 43 to 113 min. Participants' mean age was 57.9 years, and the age range was 34 to 73. Most of the participants were women. See Table 1 for additional information about the participants' clinical and socio‐demographic characteristics.
4.2. The perceived barriers and facilitators
The codes related to barriers and facilitators were collapsed into three themes: symptom recognition, psychosocial support and healthcare planning and coordination. See Tables 2, 3, 4 for sample codes, definitions and corresponding quotes respectively.
TABLE 2.
Facilitators and barriers to help seeking for symptoms of sepsis: Symptom recognition.
| Codes | Definitions | Representative quotes |
|---|---|---|
| Waiting for the symptoms to disappear | Involves thoughts that the symptoms will resolve either by waiting or using remedies or treatments prescribed as an outpatient – barrier when patient does not seek care at the hospital. | ‘When taking that stuff, the soothing stuff, I thought I was better. And it did work for a little while. I thought, well, I'm great. And then it just came crashing down’. |
| Confusion about the symptoms while managing chronic conditions | Patients who are managing chronic conditions sometimes cannot distinguish symptoms of infections from symptoms of a chronic condition they are managing—a barrier when a patient does not seek care at the hospital. | ‘A lot of this, I'm gonna say it happened when they went in and scraped my bladder, and then I ended up having to go back to the hospital the day after it because of the bladder and all that, so this is when all this pain really started’. |
| Lack of experience with bloodstream infection | Involves an inability to recognize the symptoms associated with a bloodstream infection because a lack of knowledge of symptoms of bloodstream infection leads to confusion of symptoms—a barrier when the patient does not seek care at the hospital. | ‘I had thought that I had come down with COVID‐19. And I was concerned with how much worse it could become, as far as the breathing problems and all of the symptoms of COVID‐19, versus knowing it was an actual blood infection’. |
| Healthcare providers misattribute the symptoms | Involves patients' attempts to seek care, but the healthcare provider attributes the symptoms to other conditions—a barrier when the patient does not seek care at the hospital. | ‘… they sent me to the emergency room with COVID to be diagnosed with the COVID and the pneumonia and the blood clot in my lung. And that's when they found out that I actually had a blood infection, as well as the blood clot and pneumonia. And I was actually COVID negative’. |
| Worsening symptoms | Involves ignoring symptoms until the symptoms worsen—a barrier when the patient does not seek care at the hospital. When symptoms are experienced, a facilitator leads the patient to the hospital. | ‘Well, if my hand had not swollen and was doing what it was doing, I probably would have brushed it off as nothing. But my body started going through disfiguration. I'm like, “Okay, something's wrong here.” So, it was time for me to go check it out’. |
| Family member realizing the participant was ill | Patients with an infection may experience mental status alterations that interfere with their ability to make decisions. Others have to recognize the symptoms and seek help on behalf of the patient – facilitator when symptom recognition leads to a visit to the hospital. | ‘No, there really wasn't anything. It was just my husband realizing what was wrong with me’. |
| Facing reality about the symptom severity | Involves the patient's attempt to manage symptoms at home—a barrier when they deny their need for medical help. | ‘Just being realistic enough to face the situation. And not allowing it to go further than it should have. I had to admit to myself, stop the denial, and do it’. |
TABLE 3.
Facilitators and barriers to help seeking for symptoms of sepsis: Psychosocial support.
| Codes | Definitions | Representative quotes |
|---|---|---|
| Family members were the first to be contacted when symptoms occurred | Involves the patients' reliance on family members during the help‐seeking process. Barrier when patient delays seeking care at the hospital when contacting family. Facilitator when contact with family leads to a speedy decision to seek care at the hospital. | ‘Well, my wife getting here because as soon as she walked in the door, it was like we were gone’. |
| Seeking care from primary providers or specialty physicians | Encompasses obtaining care from an outpatient clinic or contacting a specialty physician to report symptoms. Facilitator when the provider recognizes the symptoms and advises the patient to go to the hospital. Barrier when the provider does not recognize the symptoms of infection and treats the patient for an unrelated condition. | ‘I woke up on Monday morning, and I contacted my doctor in the thoughts that I actually thought I had COVID‐19. And so, my doctor called me into the office to have a COVID test done. And then, she sent me, Monday, to—She also ran up a whole bunch of lab work. And she sent me to have a chest X‐ray because they were concerned that if it was COVID that I might have pneumonia’. |
| Competing needs (e.g. work or pet care) | Encompasses either family or pet care or work demands that the illness may impact. Barrier if the patient delays seeking care due to competing demands. | ‘I need to take care of my dog. And he has epilepsy. So, he's on a medication routine that he needs to stay on, so he does not start having seizures. So, yeah. But that played a big role’. |
| Family members encouraged the person to seek care at the hospital | Includes support from family or friends who can provide emotional support or assistance during the illness. Barrier if there is a lack of support. Facilitator if encouragement leads to help seeking at the hospital. | ‘Like I say, my kids, and some members of my family were calling, saying, “You gotta go somewhere”’. |
| Family member providing transportation to the hospital | Addresses the availability of family or friends to assist with travelling to the hospital, including travel time. Barrier when no one is available to the patient to assist with transportation, and a facilitator when family or friends are available to provide transportation to the hospital. | ‘Well, my sister was available and willing. And so, that was the—She drove me down there’. |
TABLE 4.
Facilitators and barriers to help seeking for symptoms of sepsis: Healthcare planning and coordination.
| Codes | Definitions | Representative quotes |
|---|---|---|
| Worries about the cost of hospitalization | Encompasses issues of having insurance, paying for clinic visits or hospitalization or other financial difficulties. Barrier when the patient has no insurance or is experiencing other financial difficulties. | ‘I guess just financial. Just trying to be aware of how much it could cost’. |
| Healthcare avoidance | Involves attempts to avoid the hospital by doing nothing, using prescribed treatment or home remedies—a barrier to obtaining care at the hospital. | ‘I was resisting going to the hospital because I think it's a miserable experience to be in the hospital. So, I was doing everything I could to stay out of the hospital. I was too stubborn. I did not surrender to the need soon enough’. |
| Distance from the hospital | The distance from the hospital impacts the time it takes to get to the hospital to treat the infection—a barrier when the distance is far and a facilitator when the hospital is nearby. | ‘Five hours is a long drive, but other than that, really nothing’. |
| Lack of transportation | Addresses the issues of travelling to the hospital, including travel time. Barrier when the patient does not have transportation, and a facilitator when transportation is available. | ‘Well, I had to get away to the hospital. I had to move fast. Let us see what else. I do not know. It was just a bad experience. That's all I can tell you’. |
| Seeking care at local hospitals or clinics | Involves care seeking at a clinic or a local hospital. Barrier if the appropriate care is not provided. Facilitator if the providers recognize the symptoms of the infection. | ‘Because the hospital that I went to in my hometown—they are known for being slow, and people have to wait for hours and hours, so that was the worst at that hospital, but once I got to Duke, everything was fine’. |
| Long wait times at outside hospitals | Encompasses visits to local hospitals that do not result in treatment of the infection in a timely manner. Barrier when treatment is not provided in a timely manner. | ‘I just worry about the time limit that they keep me at the hospital. Like I say, if I went in at 10:00 that night, I'd lay there on the stretcher from that time until something like 6:00 that morning, so they transported me. So, when I go over there, it's a long time before they even see me, regardless of what's wrong’. |
| Perceived poor quality of care | Difficulty obtaining proper treatment for the bloodstream infection. Barrier when proper treatment is not provided. | ‘No. It was difficult to obtain the right kind of care because Rex—they did not really do that much. But at Duke, they really got me going’. |
| Knowing where to seek care | Involves whether the patient knows where to seek care, either at an outpatient clinic or hospital. Barrier if the patient does not know where to seek care for their symptoms. Facilitator if the patient knows where to seek care. | ‘I mean, we knew where we had to go, we went to the ED’. |
| Contacting outpatient providers and advised to seek care at the hospital | Includes issues with the ability to contact outpatient clinics or specialty physicians. Barrier when contact leads to delay in arrival at the hospital. Facilitator when the physician advises the patient to seek care at the hospital. | ‘When I talked to Dr. H________, and he told me that's what I needed to do’. |
| Proximity to the hospital | Involves how closeness to the hospital influences the time it takes to get there. Barrier if the distance is great, and facilitator when the distance is close to the hospital. | ‘But I'm very grateful that I live so close to Duke. So, if I have any more issues, I can be five miles away’. |
| Having healthcare insurance | Encompasses issues of having insurance coverage. Barrier if the patient has no insurance, and a facilitator if the patient has insurance. | ‘I guess my insurance’. |
| Contacting the Emergency Medical Services | Issues travelling to the hospital are addressed by contacting the EMS for transportation to the hospital. A barrier is if the patient does not contact the EMS. | ‘So, I called somebody to come get the dog and I called the ambulance to come get me’. |
4.2.1. Symptom recognition
Throughout the interviews, a significant barrier was the participants' inability to recognize the symptoms associated with an infection. Because they did not think they had an infection, many did not seek medical care by going to the hospital. The help‐seeking process began when the participants became aware of the severe illness and the need for professional help. In one instance, the participant needed her husband to realize something was wrong and that she needed to go to the hospital. Another participant undergoing treatment with chemotherapy for bladder cancer said she did not know because everything was happening all at the same time. Symptoms of co‐morbid conditions can mask the symptoms of the infection. As another example, an elderly gentleman with a history of congestive heart failure experienced worsening shortness of breath (SOB) and tried to manage it at home. He did not recognize SOB as a symptom of infection and did not seek help at the hospital until the cardiologist told him to go to the hospital. The participant stated:
I never experienced really any overt symptoms. As a matter of fact, when I was officially admitted to the emergency room, I went in there because I felt I was having a congested heart. But it turned out that all I had was congestive fluid in my system. So, I went there because I didn't know. It was like congested heart stuff.
This participant encountered intrinsic barriers when he made a personal choice to delay seeking care at the hospital because he believed he could manage the chronic condition by employing self‐care remedies at home. Additionally, the participant encountered an extrinsic barrier: the lack of transportation. However, he overcame this barrier by contacting his sister, who supported him. This example also shows how psychosocial support can be a facilitator for overcoming barriers.
4.2.2. Psychosocial support
In some instances, psychosocial support functioned as a barrier to seeking care. For example, some participants delayed seeking care at the hospital because they included family members in the decision making or waited to be told by a family member to go to the hospital. Often friends, family members and outpatient care providers were the initial sources of help rather than the hospital. However, seeking social support was most often perceived by participants as a facilitator. For example, one participant called the infectious disease (ID) doctor who cared for her when she had a previous infection, and he told her to go to the hospital.
After I had talked to Dr. H__, his recommendation was to go over to the Regional hospital and that he would see me there at that hospital. And that's why I went.
Several cases involved family members who encouraged the participant to seek help at the hospital. Participants reported that facilitators included either the participant or a family member realizing something was wrong. For example, one participant stated that her adult children told her, ‘You gotta go somewhere’. It was then that she decided to go to the hospital.
Finally, this study found that because most participants were unemployed, that is retired or disabled, social factors such as competing priorities of work or caring responsibilities were not a barrier to early help seeking overall. However, three participants had to find someone to care for their dogs before going to the hospital. Additionally, a common facilitator was the availability of a family member or a friend that provided reliable transportation to the hospital where the participants received quality care and treatment for sepsis.
4.2.3. Healthcare planning and coordination
Healthcare planning and coordination included barriers and facilitators related to transportation, outpatient clinic visits, finances and insurance (see Table 4). For example, one participant experienced difficulty getting an appointment at an outpatient clinic because of the time of day the symptoms occurred. In this case, her primary care provider was treating her for heartburn. She kept hoping she would get better. She reported that she continued to have symptoms over the weekend, and the doctor's office was not open. The participant waited for the office to open, for referrals to other care providers and for prior testing results. All of these factors contributed to the participants delay in seeking care at the hospital. Consequently, the participant's symptoms worsened, and she eventually reported to the hospital.
Another participant went to an urgent care facility and was told they could not help him and that he needed to go to the emergency department (ED). Two participants went to local hospitals and experienced long wait times. They spoke of the perceived poor quality of care they received at the local hospitals. One participant said it was a bad experience because it was difficult to ‘obtain the right kind of care’. The other participant went to a local hospital, waited overnight without treatment and was transferred to the university medical centre the next day. Another participant contacted his transplant coordinator, who instructed him to go to the local hospital, where he spent a week being treated for septic shock. When he arrived at the university medical centre, he was diagnosed with a bloodstream infection a day after being discharged from the local hospital. This participant waited 5 h for his wife to transport him to the university medical centre for further evaluation and treatment.
Finances and issues with insurance were barriers to going to the hospital. Some participants had concerns about the cost of hospitalization or problems with insurance. One participant reported:
I guess just financial. Just trying to be aware of how much it could cost. Well, yes. But that's because of my insurance, it was a big mess. Well, at first, my insurance was Signa through my husband's insurance and mine. And then it was okay, we're gonna pay for Cobra for a while. But that took a while for them to tell me about that. And it was just a mess for a while. But it's all right now.
The participants who had insurance saw that as a facilitator, but of course, not having insurance can be a barrier that may lead to delays in help seeking if the participant is trying to figure out how they will pay for care at the hospital.
5. DISCUSSION
The study's primary aim was to explore and describe the facilitators and barriers to seeking care for symptoms of suspected bacterial sepsis. Participants encountered a range of barriers to help seeking as they coped with the symptoms of the bloodstream infection. Direct content analysis revealed three types of barriers and facilitators: symptom recognition, psychosocial support and healthcare planning and coordination (see Tables 2, 3, and 4).
One of the most prominent barriers the participants encountered was the inability to recognize the symptoms associated with an infection. As a result, most participants did not seek help until the symptoms worsened. In some cases, the symptoms were not recognized because the participants lacked any experience with infection or were managing chronic conditions that made it difficult for them to determine the cause of the symptoms. An inability to recognize the symptoms of infection led to delays in help seeking as they attempted to manage their condition at home. These findings are supported by the work of Clarke et al. (2015), who identified the difficulty in recognizing symptoms of sepsis as a barrier to help seeking.
Another barrier experienced by the participants in this study emerged when individuals with symptoms preferred to rely on themselves or family members rather than seek professional help. This finding might be due to a need for insight into the illness's threat. The failure to perceive the severity of the illness and the belief that they could handle the problem independently were barriers to seeking help. The participants sometimes delayed seeking care because they wanted to wait for the symptoms to disappear. In previous qualitative studies, the authors found a failure to recognize the symptoms, and patients attempted to avoid hospitalization (Clarke et al., 2015; Gallop et al., 2015; Rorat & Jurek, 2015). Consequently, the lack of urgency, underlying beliefs and lack of knowledge were barriers to care seeking at the hospital. Clarke et al. (2015) also found that a barrier to seeking timely care was a flawed understanding of bloodstream infection and sepsis symptoms.
In the trajectory of care seeking, participants relied on family, friends and providers in the outpatient setting to provide psychosocial support. Several participants' family members were the first to be contacted when the symptoms occurred. Family members were instrumental in encouraging the participants to seek care at the hospital. Before arriving at the hospital, participants sought help from their primary providers or specialty physicians, who referred the participant to the ED after evaluating the participant. Herdman et al. (2016) found that the most predominant cause for delay in decision making was when participants sought medical treatment from unqualified practitioners. Delays occurred when there was a lack of awareness of sepsis symptoms on the part of family members or primary care providers. Targeting lack of awareness may improve outcomes and reduce pre‐hospital delays to early diagnosis and treatment. Rorat and Jurek (2015) suggested that since the trajectory of care seeking involves relatives and healthcare workers in outpatient facilities, a possible means of patient safety would be widespread knowledge of bloodstream infections and sepsis in communities and the creation of algorithms for healthcare workers and patients.
Patients and their family members should be instructed to call 911 and call the ED to notify hospital staff that they are seeking care for someone who may have a bloodstream infection or sepsis. For example, in a publication by Schorr et al. (2018), the authors evaluated patient education material from the Centers for Disease Control and Prevention (CDC) that was found to be understandable and actionable. The material provided information about sepsis and step‐by‐step instructions on what individuals should do if they suspect they have an infection. In this study, barriers and facilitators were related to a lack of knowledge of sepsis and the availability of transportation, healthcare providers and insurance coverage. As participants in this study spoke about their strategies to cope with the bloodstream infection, they revealed the facilitators and barriers they encountered in the help‐seeking process. For example, some participants lacked transportation to the hospital. They overcame this barrier by contacting family members or the emergency medical services (EMS). With regard to transportation to the hospital, sometimes the distance from their home to the hospital was a barrier that caused delays in help seeking. On the other hand, living near the hospital where help was sought facilitated help seeking by reducing behavioural delay.
The findings regarding competing priorities were not prominent because most of the study participants were unemployed, retired or disabled. However, a similar idea emerged: three participants who had to obtain care for their dogs delayed seeking care. These participants identified personal responsibilities that interfered with their ability to seek help at the hospital in a timelier fashion. Clarke et al. (2015) also found that social factors such as competing priorities, like work, are barriers to help seeking.
In terms of healthcare planning and coordination, one important facilitator is that all participants knew where to seek care. However, two participants who sought care at local hospitals experienced long wait times at outside hospitals (OSHs). Additionally, perceived poor quality of care was also noted as a barrier in this study. Finally, some participants reported that they accessed health care through outpatient appointments before presenting to the hospital, which contributed to delays in arrival at the hospital.
The participants in this study reported other barriers and facilitators to help seeking that they experienced in the decision‐making process. This study identified that having health insurance influenced the decision to seek help but did not always shorten the delay time. All of the participants had some health insurance coverage. One participant indicated that she was worried about the cost of hospitalization when she experienced the symptom onset because she was transitioning from one insurance to another. Although the participant reported having some challenges with insurance that she resolved, the lack of insurance was not a barrier for most participants in this study. Other participants expressed concerns about the financial impact of being hospitalized for the bloodstream infection. Herdman et al. (2016) found that adults classified as poor experienced longer delays in help seeking. Individuals classified as poor were less likely to contact a qualified doctor. The participants classified as poor experienced delays related to a lack of money (Herdman et al., 2016).
Other research studies have addressed the lack of insurance and help seeking. Researchers have found a lack of insurance correlated with death due to sepsis in community‐onset sepsis because individuals may delay seeking care for serious illness (Baghdadi et al., 2018; Bogale et al., 2017; Charlet et al., 2017; Herdman et al., 2016). Baghdadi et al. (2018) found that the lack of insurance was a barrier to timely care. The authors surmised that patients who lack insurance might be affected by other poverty‐related barriers, such as lack of transportation and competing needs. Herdman et al. conducted a study in Bangladesh to determine the relationship between poverty and pre‐hospital delays in patients with acute febrile illnesses (Herdman et al., 2016). These researchers attributed delays in decision making and travel to a lack of money and concluded that multidimensional poverty is associated with increased pre‐hospital delays. Kumar et al. (2014) suggested that patients who lack insurance might delay seeking care for serious diseases. Herdman et al. (2016) recommended addressing the consequences of poverty and streamlining access to adequate health care.
This study's findings are consistent with barriers to access to care listed in HP 2030 (Healthy People 2030, n.d.). Accessing health care for the participants in this study was related to the availability of social support, providers, transportation, money, and insurance. Provider availability and office or hospital wait times were barriers to accessing care for these participants. HP2030 focuses on improving health by helping people get timely, high‐quality care. Interventions are needed to increase access to healthcare professionals and improve communication between patients and providers. Consistent with the goals of HP2030, this study highlights the role of social and community support and the impact of relationships with healthcare providers and interactions with family, friends and co‐workers. HP2030 focuses on helping people get the social support they need. This vital resource can guide interventions to improve community support related to the prevention and management of bacterial sepsis.
When interpreting the results of this study, the following limitations should be acknowledged. First, recruitment took place at a single site in the United States, creating potential selection bias due to a convenience sampling strategy. Additionally, the circumstances surrounding the experience of having an infection may have impacted the patients' recollection of the details of the episode, leading to recall bias (Glen, 2016).
6. CONCLUSIONS
To gain access to early goal‐directed therapy, patients experiencing symptoms of bacteraemia and sepsis must present to the hospital promptly. This study found that participants sometimes encounter a myriad of barriers and facilitators in the help‐seeking decision‐making process that result in delayed presentation. Some wanted to avoid hospitalization. Sometimes, the patients' emotional reactions to the illness, that is fear or anxiety, resulted in help‐seeking delays. In addition, there were concerns about the discomforts and inconveniences associated with being in the hospital.
Worsening symptoms influenced the decision to seek care at the hospital. Family, friends or providers also encouraged the participants to seek help at the ED. Facilitators enabled participants to seek care once they overcame the psychological and social barriers impeding their decision to seek care. However, barriers had a negative impact and altered the trajectory of care for the participants. Therefore, it is essential to understand the barriers and facilitators to help seeking. This investigation touches on the notion of individuals maintaining control over their lives, even during a serious medical emergency. It also reveals the phenomenon of misinterpreting the signs and symptoms of sepsis. Misinterpretations are related to perceptions of the risk and contribute to delayed help seeking. More research is needed to explore perceptions of infection risk, increase knowledge of symptoms, and test interventions designed to reduce delays in seeking treatment. The Get Ahead of Sepsis campaign developed by the CDC provides educational resources that can benefit patients and caregivers to recognize the impending signs of sepsis (Fay et al., 2020). Creating appropriate theory‐informed interventions that address multiple and complex psychological and socio‐cultural factors for adults at risk for infection is one way to influence behaviour change and improve outcomes for individuals experiencing bacterial sepsis.
AUTHOR CONTRIBUTIONS
FR, EVH, and SL conceived the idea and contributed to the design of the research. FR processed the data, performed the analysis, drafted the manuscript, and designed the tables with input from all authors. EVH, LKM, and SL verified the analytical methods and supervised the project. All authors discussed the results and approved the final version of the manuscript.
FUNDING INFORMATION
This work was supported by grants from the National Institutes of Health: Award Number 5K24AI093969.
CONFLICT OF INTEREST STATEMENT
No conflict of interest has been declared by the authors.
ACKNOWLEDGEMENTS
Work contained in this manuscript was made possible by a grant from the National Institutes of Health that was award to Vance G. Fowler, MD (Award Number 5K24AI093969). The content is solely the authors' responsibility and does not necessarily represent the official views of the National Institutes of Health.
Ruffin, F. , Van Horn, E. , Kennedy‐Malone, L. , & Letvak, S. (2023). Identifying barriers and facilitators to seeking care for symptoms of bacterial sepsis: A qualitative study. Nursing Open, 10, 7323–7332. 10.1002/nop2.1985
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