Abstract
Introduction: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a model of nurse-led, early palliative care that was originally developed for U.S. patients with advanced cancer and their family caregivers and then adapted for patients with heart failure. ENABLE coaching topics include problem-solving, communication, advance care planning, symptom management, and self-care. The purpose of this paper is to detail a qualitative study protocol to assess the cultural acceptability of ENABLE among heart failure patients and their family caregivers in Iran.
Methods and analysis: This is a qualitative study employing a thematic analysis approach. In the first phase, the translation and validation of ENABLE model contents will be conducted using the standard forward-backward method and an expert panel. In the second phase, through the purposive sampling method and by using semi-structured interviews, approximately 45 participants including heart failure patients (n≈15), their family caregivers (n≈15), and healthcare professionals involved in their care (n≈15) will be invited to participate in one-on-one semi-structured interviews exploring three main areas: (1) the primary needs and challenges faced by individuals with heart failure and their family caregivers, (2) the extent of patients’ involvement in healthcare decision-making, and (3) participants’ preferences for content and delivery method of ENABLE. Interview audio recordings will be transcribed verbatim and data will be analyzed using Clarke and Braun thematic analysis method including 1) Familiarization with the data, 2) Generating initial codes, 3) Searching for themes, 4) Reviewing themes, 5) Defining and naming themes, and 6) Preparing the report/manuscript. Study rigor will be assessed based on Lincoln and Guba’s gold standards: credibility, dependability, confirmability, and transferability.
Ethics and dissemination: Ethical approval has been granted by Institutional Review Board at Tehran University of Medical Sciences (IR.TUMS.FNM.REC.1401.133). We expect to disseminate study findings through journal articles, conference presentations, and public and social multimedia.