Educational needs of patients with advanced heart failure and their caregivers

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

“…Qualitative studies [30, 36, 40, 42, 45, 48, 54, 61, 71, 72, 74, 77, 80, 83, 88, 104, 110, 117, 119, 131, 137, 138, 142] described a wide range of needs that caregivers felt underprepared for or in need of assistance with, including coping with and managing symptoms; understanding HF and prognosis; handling unplanned hospitalizations and other emergencies; managing medications and devices; providing and receiving emotional and spiritual support; partnering in patients’ self-care; balancing home and work; engaging in their own self-care; having difficult conversations; handing uncertainty about the future and the unpredictably of the disease; communication and care coordination; understanding palliative care services; managing the home; dealing with financial issues; knowing what to expect and how to care for patients at end of life; and leveraging and timely access to formal and informal social support and services. Two quantitative studies both identified handling emergencies as a situation that caregivers’ felt most unprepared for [127, 136]. …”

Veterans' decision-making preferences and perceived involvement in care for chronic heart failure

“…[35][36][37][38] Other investigators have observed that increasing age can serve as a barrier to effective patient-provider communication. [35][36][37]39,40 Finally, others have shown that the combination of socio- demographic characteristics and individual experiences plays a role in patient preferences for information gathering and decision making. 19,[41][42][43] For example, patients with a higher socioeconomic status and educational level tend to ask more questions and request more explanations and clarifications than do their less educated counterparts, 44 perhaps because they have more confidence or knowledge or because they perceive a smaller patient-provider status gap.…”

Developing a Web‐Based Education and Counseling Program for Heart Failure Patients

“…Phase 1 Phase 1 focused on assessing the information needs of older patients receiving specialized care at a university‐affiliated HF clinic. This was accomplished through a secondary analysis of data on the educational needs of patients with advanced HF, which we have previously reported 18 . Participants in the original study (N=82) were asked to complete the Heart Failure Needs Questionnaire, comprising 23 questions that evaluate the need for information and counseling across 6 subscales: concern for the future, dealing with emergencies, information, emotional support, personal needs, and financial concerns.…”

“…Subjects answered questions using a 5‐point Likert scale, with 1 indicating “not important” and 5 indicating “very important.” The items with the highest average scores were then ranked from highest to lowest importance. The internal reliability of the instrument using Cronbach's α was 0.93 in our earlier study 18 . For the current analysis, we analyzed the educational needs of the subset of patients 60 years of age and older (n=69) with a medical diagnosis of HF and an ejection fraction <40%, and receiving care in the HF clinic for <1 year—the target population for which the educational Web‐based program was being developed.…”