Title : I felt really unsupported: How the health care system can better engage with informal caregivers of people with heart failure
Abstract:
In Australia, the self-management of heart failure in the patient’s home is recommended by Clinical Guidelines to decrease (re)hospitalisation and mortality and should actively include both the patient and their caregiver. However, there is an expectation that as part of the self-management process, high quality clinical care is delivered by a lay person with little to no education and training on how to do so. The significant contribution informal caregivers have to their loved ones’ ongoing stability and wellbeing cannot be understated, and yet, it is well documented that the role of an informal caregiver of someone with heart failure is complex and demanding.
This can lead to high levels of stress and burden on the caregiver, resulting in poor health outcomes for both the caregiver and their loved one.
This paper explores the experiences of caregivers of people with heart failure and the health care system as they navigate the complexity of caring for their loved one with heart failure. A series of semi-structured interviews were conducted with eleven primary caregivers of people with heart failure. These interviews were transcribed verbatim and analysed using Braun and Clarke’s framework for thematic analysis.
Caregivers experience a high level of dissatisfaction with the engagement and support from the health care system. They felt they were expected to implement or support complex care regimes, medication adherence, and timely clinical decision making that seemed unreasonable to place on a layperson, whose only qualification is that they are the loved one of the individual with heart failure. Caregivers believed they were not provided with the appropriate knowledge or skills to manage their loved one’s heart failure and were forced to search elsewhere - primarily the internet - for information to help them make decisions. Additionally, caregivers felt the health care system did not provide appropriate emotional or psychological support or guidance on where such support can be accessed.
The level of responsibility placed on informal caregivers of people with heart failure appears to be disproportionate to the knowledge and support provided to them. If caregivers are to be held responsible and accountable by the health care system to deliver and support a self-management plan at home, then they need to be actively engaged throughout the caregiving journey by the health care system and provided with the appropriate resources to be successful.
