‘It’s very hard to actually find out what’s going on‘

The Dorrido Mountains, Bellingen National Park, Australia, photo taken by Merryn Gott

Our new publication confirms that family members experience significant difficulties in gaining access to healthcare professionals who can provide them with the information they need to care for a person with heart failure. Whilst hospital admissions were common, as one of our participants shared: ‘you can’t ask the doctors ‘cause they’re busy, the nurses are busy. Do you ask the person on reception on the ward, who do you ask?’.

Hospital ward routines created another barrier for family to gain access to healthcare professionals, as did the lack of consistency in clinical staff caring for their family member. Worryingly, some family members found that their attempts to discuss concerns were either not heard or ignored.

One participant summed up what is needed to improve the experiences of family and whānau caring for someone with heart failure:

I feel that it would be really helpful to actually have someone sat with the family, and with the patient, and really talk to them about what the family should be aware of in her situation, someone with a heart condition. What are some of the things that we need to be mindful of that can occur for that patient? And also, so that the patient can try and understand as well what the problem is and how can we as a family try and resolve it. It’s about empowering the family with that knowledge and then, if it’s not helping, then we know that we can turn to the health services for assistance.