Imatullah Akyar1,2, J Nicholas Dionne-Odom2,3, Marie A Bakitas2,3. 1. 1 Faculty of Nursing, Hacettepe University, Ankara, Turkey. 2. 2 School of Nursing, University of Alabama at Birmingham, Birmingham, AL, USA. 3. 3 Division of Geriatrics, Gerontology, and Palliative Care, Department of Medicine, University of Alabama at Birmingham Center for Palliative and Supportive Care, Birmingham, AL, USA.
Abstract
OBJECTIVE: : 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. METHOD: : One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient-caregiver 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. RESULTS: : 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. CONCLUSION: : 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.
OBJECTIVE: : 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. METHOD: : One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient-caregiver 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. RESULTS: : 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. CONCLUSION: : 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.
Entities:
Keywords:
formative evaluation; heart failure; palliative care; patient and caregiver perspectives; qualitative research
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