Self-management (SM) can impact the quality of life (QOL) outcomes of patients with chronic complex conditions.1 However, very little is known about SM in ventricular assist devices (VADs) despite the major goal for the device implant is to improve QOL.2 Emerging data suggest that patients/caregivers experience challenges in managing the complex VAD care regimen (e.g., maintenance and troubleshooting of the VAD system) despite receiving education/training before hospital discharge.3–5 We conducted this study to address the scarcity of VAD SM research by exploring patients/caregivers issues related to VAD care after hospital discharge.
Using a descriptive mixed-method research design, we analyzed the data provided by a nonrandom sample of 102 patients and 116 caregivers (n = 218) who participated in an instrumentation research published elsewhere.4,5 In the parent study,4,5 an electronic flyer was used in recruiting study participants from four online support groups where members comprised of VAD patients and caregivers throughout the United States. Patients and caregivers (i.e., study participants) who contacted the study team were screened and subsequently included in the study if they could read and comprehend the English language, agreed to complete and return the questionnaires via the US Postal Service, and provided an informed consent. The 218 participants completed demographics and nine-item questionnaires related to VAD care issues. These questions were appended in the instrumentation research, which consisted of multiple choices and open-ended responses to elicit data of the challenges faced by patients/caregivers regarding VAD SM after discharge (see Appendix, Supplemental Digital Content, http://links.lww.com/ASAIO/A230). We used descriptive statistics and content-analytic procedures6 in analyzing quantitative and qualitative data.
Results of the study are summarized in Tables 1 and 2. Study participants (mean age, 50.0 ± 13.1 years) were predominantly female (59%), white (80%), married (77%), and had college education (60%) from the Midwest (32%). Almost all patients (95%) had dedicated caregivers (family or friend) who were also employed (66%) full time or part time. All patients had continuous rotary-flow left VADs (LVADs) (85% axial and 15% centrifugal flows) with mean implant duration of 19.7 ± 15.0 months. Ventricular assist devices were implanted as bridge-to-heart transplant (70%), destination therapy (20%), or bridge-to-myocardial recovery (10%).
After hospital discharge, a small number of participants (≤5%) reported having difficulties with retention of the VAD care competency (knowledge and skills) they learned in the hospital as well as difficulties in performing the daily VAD care tasks (Table 2). However, 52% (patients) and 45% (caregivers) of them had expressed the need for and importance of VAD care re-education/training within 6 months postimplantation hospitalization. This finding was elaborated by a theme, “the need for VAD self-care knowledge and skills review,” emerged from qualitative analyses. Example of sentences/phrases elaborating this theme included:
Patient: “I will learn the best if I can repeat the information over and over again; need for retraining sessions.”
Caregiver: “I would love to have a six-month refresher class.”
A possible explanation for re-education/training need is the complexity of VAD care itself, and the prevalence of psychologic distress among patients and caregivers7 may have impeded their ability to master VAD care. Periodic VAD care competency assessments and reassessments are therefore needed to address this problem.
When asked about the type of support they needed “most” from the VAD team, 82% of the participants expressed the need for a frequent follow-up regarding VAD care and health-related concerns. They most preferred telephone call (67%) or videoconferencing (58%) as a medium for communicating with the team (Table 2). For the 183 participants who had home-care services, only 17% of patients and 37% of caregivers found the home-care registered nurses (RNs) as being “supportive or helpful” with VAD care. This was also elaborated by the theme “lack of home-care RNs trained for VAD.” Example of sentences/phrases elaborating this theme included:
Patient: “…the nurses had no understanding of the VAD; I don’t believe she had very much training in regard to VAD.”
Caregiver: “Home care nurses are not familiar with VAD. I could do BP [blood pressure, and measurement of] other vitals [vital signs]…she asked me to “refresh” her memory on sterile bandage change.”
To date, no practice guideline exists with reference to guiding VAD care teams’ reassessment of VAD care competency after discharge. The “one-time” education/training may be insufficient in sustaining patients/caregivers’ VAD SM competencies.
Given the high workload of VAD nurses/coordinators responsible for providing VAD care education/training, a less time-consuming approach (e.g., use of smart phone videoconferencing) may be efficient in reassessing the patient/caregiver needs for VAD care education/training. Efficacy and efficiency of videoconferencing in conducting clinic appointments and patient education have been demonstrated in some chronic and complex diseases.8 However, it is important to note that not all patients/caregivers are electronically savvy to operation this avenue of communication. Using a checklist outlining the critical elements for VAD SM such as changing controllers and dressings may further enhance the efficiency of competency reassessment and revalidation process. Additionally, anniversary education, annual clinic visits that fall on date of implant that incorporates review of necessary education/training, may be integrated to promote continued knowledge and increased VAD care self-efficacy (self-confidence). Self-efficacy has been linked to adherence and QOL outcomes in patients with VADs.9 A small group (groups of 2 or 3) annual “check-offs” of all VAD patients/caregivers may be fruitful competency reassessment strategy.
Unfortunately, VAD centers seemed to experience a shortage of trained home-care RNs who can assist patients/caregivers in sustaining VAD SM competencies. It is troublesome that 54% of the participants were dissatisfied with home-care RNs. This dissatisfaction is consistent with a study showing home-care RNs’ low level of competence with heart failure management, translated to poor patient education and quality care.10Thus, VAD centers should also routinely assess the competency and adequacy of outpatient support personnel available to ensure safety and quality of care.
In conclusion, despite receiving comprehensive VAD education/training before hospital discharge, patients and caregivers in this study still perceived lack of VAD SM competencies after discharge. Further research is necessary to scrutinize the current discharge process and long-term care support including routine reassessment of VAD SM competencies and the impact of the role of home health care providers on VAD outcomes. A longitudinal patient–caregiver dyad research design using comprehensive measure to evaluate VAD care issues after discharge and accounting variables (e.g., cognition, health literacy, LVAD indications, type of centers) that can significantly impact VAD SM outcomes is warranted to confirm our findings.
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