%0 Journal Article
%T Using Patients and Their Caregivers Feedback to Develop ENABLE CHF
%A Imatullah Akyar
%A J. Nicholas Dionne-Odom
%A Marie A. Bakitas
%J Journal of Palliative Care
%@ 2369-5293
%D 2019
%R 10.1177/0825859718785231
%X Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure. One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient¨Ccaregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach. Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included ¡°allowed me to vent,¡± ¡°gained perspective,¡± ¡°helped me plan,¡± and ¡°gained illness management and decision-making skills.¡± Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format. Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial
%K patient and caregiver perspectives
%K heart failure
%K palliative care
%K formative evaluation
%K qualitative research
%U https://journals.sagepub.com/doi/full/10.1177/0825859718785231