With a push to improve patient experience and reduce costs, central venous catheters (CVCs) are increasingly maintained outside the hospital, such as in skilled nursing facilities (SNF), hemodialysis centers, outpatient infusion clinics, oncology clinics, and homes.¹ While some patients may require a CVC for a period of weeks, others require lifelong CVCs for conditions such as intestinal failure requiring parenteral nutrition (PN), inotropic therapies, or hemodialysis where an arteriovenous fistula or graft is not feasible. The National Home Infusion Association estimates that over 3 million patients received home or specialty infusion therapy in 2019--a 300% increase over the prior decade.^1,2 For example, 80% of chemotherapy is provided in ambulatory settings (e.g., oncology clinics and the home), including parenteral chemotherapy via CVCs.^3,4 The majority (71%) of patients initiating hemodialysis initiate hemodialysis via a CVC,^5,6 despite major initiatives promoting arteriovenous fistulae and grafts for hemodialysis.⁷ Outpatient parenteral antimicrobial therapy (OPAT) allows stable patients to receive long-term antimicrobial therapy in the home, SNF, hemodialysis, or infusion centers.⁸ Other patients may require CVCs for intermittent infusions (e.g., iron, factor, immunoglobulin, etc.) at home or in infusion centers, or even life-sustaining home-based inotropic therapies.

Similar to patients with CVCs in acute care hospitals, patients with CVCs outside of acute care hospitals are at risk of central line-associated bloodstream infection (CLABSI). Over one year, more people were admitted to a tertiary academic medical center with CLABSI than developed CLABSI in the hospital.⁹ In home infusion therapy, CLABSI occurs at a rate of 0.2–0.24/1000 CVC-days.¹⁰ Meanwhile, most activities directed towards preventing CLABSI through ensuring best practices around insertion and maintenance of CVCs focus on acute care hospitals,¹¹ including initiatives through the Centers for Disease Control and Prevention and the Centers for Medicare and Medicaid Services.^12,13

Unlike in acute care hospitals, CLABSI prevention in community settings requires involvement of patients and their caregivers. Patients and caregivers must perform day-to-day CVC care and (in home care) infusions using sterile technique. Therefore, CLABSI prevention tools and educational initiatives in community settings must be tailored for patients and their caregivers.^14–18 In particular, CVC maintenance training for patients and caregivers is necessary for CLABSI prevention, but it is unclear how health care personnel (HCP; e.g., home health nurses, home infusion nurses, acute care oncology nurses, ambulatory oncology nurses) caring for patients maintaining CVCs in the home may approach training patients and caregivers.

In this study, focus groups of HCP who provide training to patients and caregivers about CVC care to patients and caregivers were convened. The intent was to learn about how HCPs teach CVC care to patients and caregivers, and how they might use newly developed tools (e.g., videos, short and long instructional manuals, handouts)^17,18 to teach CVC care to patients and caregivers.

Three focus groups were conducted between January 2023 and February 2023. There were two to three members in each focus group, with eight total participants. Half worked in home infusion, a quarter worked in inpatient oncology, and a quarter worked in outpatient oncology. All were nurses (Table 1).

Four major themes and 25 subthemes were identified (Table 2). First, participants identified the importance of providing the right amount of education at the right time. Second, participants identified the importance of tailoring education to patient or caregiver needs. Third, participants identified the importance of patient education tools, including those proposed. Fourth, participants identified the importance of managing differences in protocols or equipment.

Four major themes in teaching patients and caregivers about CVC care and CLABSI prevention in the home were identified. HCP focused on providing the right amount of patient or caregiver education at the right time, and tailoring education to patient or caregiver needs. HCP reported that differences in guidance, tools, or approaches to tasks are confusing to patients, so it is important to develop ways to manage or explain these differences. The data from this study can be used to design CVC care educational materials to help patients and caregivers properly care for CVCs in the ambulatory setting.

HCP focused on providing the right amount of information to patients and caregivers, at the right time, and in a place with few distractions, to ensure patients had acquired the appropriate skills, knowledge, and behaviors²⁶ to perform CVC maintenance without being overwhelmed. Providing the right amount of information at the right time is a way of managing information hazards, in particular, avoiding information overload.²⁷ Information overload occurs when the volume of data exceed the ability of an individual to organize or act on the data.²⁷ Participants described mitigating information overload by focusing on the most important things a patient or caregiver needs to learn, repeating the teaching, teaching in stages, and performing teaching away from distractions at a time where the patient can absorb the information. Similarly, reducing distractions for HCP when performing important tasks (e.g., operating room tasks, handoffs, verifying high-risk medications, etc.) improves patient safety.²⁸ Patient education should be performed without distractions using a similar “sterile cockpit” methodology.²⁸

Participants reported tailoring education towards patient and caregiver needs. They focused on performing an individualized assessment for the patient or caregiver’s preparation for learning, learning style, and skillset. For example, some studies have shown that older adults may prefer written information that is provided by health professionals or downloaded online.²⁹ In other studies, face-to-face information supplemented by videos may be preferred.³⁰ Providing education to patients in a format most relevant to the patients’ preferred style of learning is important in this setting. They also discussed skipping unnecessary portions of teaching tools. Future research could investigate how HCP choose when to vary from a teaching protocol, and when teaching protocols can be more streamlined.

Patient education tools were considered to be particularly important. As described above, some patients and caregivers preferred written while others preferred verbal or audiovisual information. However, a cognitive aid was also recommended. A laminated (and easily cleanable) paper, approximately the size of a placemat, that allowed patients to set out their flushes, alcohol or chlorhexidine wipes, and medications in order so that they would not forget steps was one example of such a cognitive aid.³⁰ In human factors engineering, cognitive aids are tools that are intended for use during the completion of a task, and are designed to help users complete a task³¹ and that decrease errors in health care.³² Simulation studies show an association between cognitive aids and improved performance.³³ Cognitive aids are sometimes used in presenting information to patients,³⁴ but more work should be done to create cognitive aids to help patients prevent health care associated infections (HAIs) such as CLABSI.

Participants also discussed the need to mitigate inconsistencies in tools, procedures, and protocols. Inconsistencies came from differences in devices used (for example, when a hospital system changes brands of peripherally-inserted central catheters, or an oncology clinic and home infusion agency used different brands of antiseptic end caps). These differences sometimes led to patient and caregiver confusion.²⁷ Inconsistencies also came from differences in protocols, for example, where there was ambiguity about the best way to perform a task and different approaches may both have been appropriate.³⁵ Information conflict, another information hazard, can also lead to errors. To mitigate differences, patient education tools should streamline instructions but also show where differences in approaches may be appropriate based on patient or caregiver needs.

In general, transitions between health care settings—and particularly the hospital-to-home transition—are a high-risk period for patient safety events.³⁶ Patient and caregiver education is key in reducing patient safety events at transitions. While most patient education interventions targeting patients going home focus on medication management, HAI prevention—and in particular, CLABSI prevention—should also be targeted. Interventions engaging patients in reducing surgical site infections have led to decreases in healthcare-associated infections.³⁷ Understanding how to best support patients and caregivers in CLABSI prevention in the community is an important step.

This study was subject to several limitations. First, the number of participants was low, which limited generalizability. However, thematic saturation was achieved. In addition, the purpose of qualitative work is not generalizability, but rather to develop a deeper understanding of a process. Further research is necessary to validate these findings in different settings. Second, participants were nurses, some of whom worked in oncology clinics or an oncology floor affiliated with a large academic health care system, and some of whom worked in home infusion agencies not affiliated with a large academic health care system. It is possible that perceptions would differ if other HCP or staff working in other outpatient infusion centers, oncology clinics or hospitals, or other home infusion or home health organizations were included. Third, the focus group members were shown examples of tools during the focus group, and were provided the opportunity to view these before, but did not view the tools in advance for the most part. If they had more time to review the tools, the comments on the tools may have differed. Fourth, patients and caregivers themselves were not included in these focus groups. Future work should engage patients and caregivers in the review of these tools.

This study is one of the first to focus on patient education for CLABSI prevention outside of acute care or long-term care settings. A broader sample is needed to determine whether everyone responsible for patient and caregiver education are using best practices such as providing the right amount of education at the right time, targeted towards their needs and preferences, using tools, and mitigate potential differences in instructions. Researchers should also work to increase the evidence base for CLABSI prevention in outpatient or ambulatory settings, to ensure appropriate evidence to mitigate differences in instructions. Patients and caregivers are largely responsible for CVC care and CLABSI prevention outside of acute care hospitals and long-term care settings. They have to keep the CVC dressing dry and intact while going about their everyday activities including bathing, they frequently have to access the CVC themselves, and in some cases, they may need to reconstitute medications. They must perform all of these activities consistently and carefully to reduce the risk of CLABSI. HCP have an obligation to provide them with appropriate education and tools to best enhance their ability to keep themselves safe. These qualitative data should be confirmed in other settings and with quantitative data.