Background Heart failure is a life-limiting condition with a debilitating symptom burden (McMurray, Adamopoulos, Anker, et al., 2013). The prognosis for those living with heart failure is unpredictable and poor (Jaarsma, van der Wal, Hjelmfors, et al., 2018). Research has indicated that end-of-life care can improve symptom management and decrease caregiver burden (Buck, Harkness, Wion, et al., 2014; McIlfatrick, Doherty, Murphy, et al., 2018). However, despite this, referrals to palliative care services for people with heart failure remains low (Gadoud, Kane, Macleod, et al., 2014). Therefore, exploration of bereaved caregivers’ experiences of providing end-of-life care to a person with heart failure is required.
Aim The aim of this review was to present and synthesise the current evidence around bereaved caregivers’ experiences of providing end of life care for people with heart failure.
Methods A systematic review of the literature was undertaken using a search of four electronic databases (CINAHL, PubMed, BND, PsycINFO). Due to a scarcity of literature relating to heart failure, the search was expanded to include other long-term conditions. Research published between January 2000 – March 2021 with a qualitative methodology, focusing on bereaved caregivers’ experiences of providing end-of-life care for people with heart failure and other long-term conditions was included. Data was analysed and presented using a narrative synthesis approach.
Results Nineteen articles were critically appraised and included within this review. Four broad themes were identified: Limited and inadequate communication around the condition (including prognosis, preparations for death and the role of palliative care), the burden of caregiving, the positive experience of providing care at the end-of-life, limited provision of services and formal support.
Conclusion Bereaved caregivers experience significant challenges when caring for a loved one dying of heart failure or another long-term condition. This includes high levels of caregiver burden which is exacerbated by perceived inadequate communication, limited service provision and access to formal support. However, further research is required in this area to greater understand the specific end of life care experiences of bereaved caregivers of people with heart failure.
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