Family caregivers' experiences of accessing information from healthcare professionals in heart failure

Background: With growing reliance on family caregivers to support people with advanced heart failure and to help them die at home, family caregivers need the relevant information to support this. However, evidence has shown that families continue to have deficits in their knowledge of heart failure and what to expect as the disease advances. This can lead to a high level of uncertainty and stress for family. Aim: To explore family caregivers experiences of accessing information from healthcare professionals when caring for someone with heart failure. Method: A qualitative exploratory study design was adopted using a critical realist approach. The study was conducted in one large urban area of Aotearoa New Zealand. Participants were family caregivers of people who had died between April and November 2019. Data was collected using semi-structured telephone interviews. Results: A total of 15 family caregivers participated. A thematic analysis identified three themes related to accessing information from healthcare professionals: 1) gaining access to healthcare professionals 2) developing, understanding and translating information and 3) receiving information in a timely manner. Conclusions: Findings highlight the difficulites that family carers of people with heart failure experience in accessing, receiving and understanding the information they require. Further research is needed on supporting healthcare professionals to develop skills in appearing accessible within an environment of 'busyness'. Furthermore, investigating strategies which will enable healthcare settings to be more responsive and flexible to the needs of family caregivers is needed.