Cultural adaptation of Educate, Nurture, Advise, Before Life Ends (ENABLE) for patients with heart failure and their caregivers in South-East Asia – a qualitative formative evaluation study

ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse-led model of palliative care health coaching, developed in the United States. We evaluated the cultural appropriateness of ENABLE for patients with heart failure (HF) and their caregivers. For this qualitative formative evaluation study using semi-structured interviews, we recruited patients with HF, family caregivers, and healthcare clinicians from the National Cancer Centre Singapore and the National Heart Centre Singapore. Interviews focused on a) challenges living with HF b) perspectives towards coaching c) views towards ENABLE program delivery. Interviews were conducted in English and Chinese, audio-recorded, and transcribed verbatim. Data were analyzed using a hybrid deductive-inductive thematic analytic approach. In total, 28 participants (7 patients, 5 caregivers, 16 healthcare clinicians) reported 3 key areas relevant for adaptation - Coping with Challenges, Coaching, and Delivery. Content areas related to coping were motivating participants towards seeing the benefits of health coaching, taking control of their condition and advance care planning. Coaching content needed to be tailored for specific socio-demographic-illness factors like age, education, illness stage, and cater for caregivers’ needs. Regarding coaching, participants preferred a consistent nurse coach who was specialized in health coaching, had sufficient emotional maturity, communication skills, and could individualize coaching content. Desired nurse coaching styles included being informal, not addressing issues head-on, being non-judgemental, pacing with participants and a need for overcoming potential resistance to health coaching such as an over-focus on pragmatic problem solving. Regarding delivery, participants emphasized suggestions that would improve ENABLE uptake such as the need for flexibility in ENABLE delivery such as timing and mode of coaching. The ENABLE booklet should be simple, available in multiple languages, and with Asian-centric graphics. Participants advised caution around culturally sensitive topics like death. Culturally adapted ENABLE will need to include the benefits of health coaching, taking control, and care planning. Nurse coaches will need to be trained in health coaching and communication skills. ENABLE must be flexible, accommodate different languages and socio-cultural norms, whilst overcoming barriers to health coaching. Our adaptation process lends itself as a base for cultural adaptations of ENABLE in other settings. Not applicable.