Using patients and their caregivers feedback to develop ENABLE CHF-PC : an early palliative care intervention for advanced heart failure

Article

AKYAR, Imatullah | DIONNE-ODOM, J. Nicholas | BAKITAS, Marie A.

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.

http://dx.doi.org/10.1177/0825859718785231

Voir la revue «JOURNAL OF PALLIATIVE CARE, 34»

Autres numéros de la revue «JOURNAL OF PALLIATIVE CARE»

• Description
• Sujet/Public
• Outil
• Outil d'anticipation
• Gestion