Bereaved caregivers' experiences of EoLC for people with HF V2.0
Research type
Research Study
Full title
Bereaved caregivers' experiences of end of life care for people with Advanced Heart Failure: An interpretative phenomenological analysis.
IRAS ID
288940
Contact name
Melanie FJ Diggle
Contact email
Sponsor organisation
Oxford Brookes University
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Heart Failure is a syndrome that arises due to anatomical and physiological changes to the heart, affecting over 920,000 people in the United Kingdom. Despite advancements in medical interventions, the prognosis for those with Heart Failure is poor. Living with and dying from Heart Failure is a complicated process that can involve periods of distress for both the person and their caregiver. To date, research has recognised that caregivers play a significant role throughout the course of the condition. However, there is limited research that focuses on the experience of the caregivers at the end of the person's life and their subsequent death. Therefore, this study will seek to explore and interpret bereaved caregivers’ experiences of caring for a person with Advanced Heart Failure who has reached the end of their life.
To achieve this, twelve bereaved caregivers of people with Heart Failure will be identified and recruited to the study through National Health Service (NHS) sites and social media in addition to Heart Failure, bereavement specific and third-party organisations. Due to the anticipated challenge of identifying potential participants, recruitment and data collection will last up to one year. However, participants will only be asked to take part in one semi-structured interview via the telephone or virtually, lasting up to 90 minutes. Following completion of the interviews the audio recordings will be transcribed and then analysed by the Chief Investigator. The findings of the study will be disseminated throughout the research community, with the aim of considering the possibility of enhancing the experience of the care and support that current and future caregivers of people with Heart Failure receive, by influencing policy and professional practice around end of life care for this group of people.
Results Summary
Thank You to the Study Participants
We would like to extend our heartfelt thanks to everyone who took part in this research. Your willingness to share your experiences of caring for a loved one with heart failure made this study possible. Your contributions have provided valuable insights that we hope will lead to meaningful improvements in care and support for caregivers in the future.General Information About the Research
Study Title
Bereaved caregivers experiences of end-of-life care for people with heart failure: An interpretative phenomenological analysis.Who Carried Out the Research?
This research was conducted by Melanie Diggle, as part of a PhD project at Oxford Brookes University. The study was supervised by a team of academic researchers in palliative care.
Competing interests: The researcher declares no competing interests.What Public Involvement There Was in the Study Public involvement in the study included individuals with lived experience of caregiving in the context of heart failure and heart failure nurses. They were involved in helping to shape the research question, reviewing study materials, and advising on ethical issues. Their input ensured the research remained relevant and sensitive to the needs of caregivers.
Where and When the Study Took Place
The study took place in the United Kingdom between 01/06/2021 and 19/03/2025. Data were collected remotely, using telephone or online interviews.Why Was the Research Needed?
Heart failure is a progressive and life-limiting condition that impacts both the person living with the illness and their family members. Despite the complex care needs associated with heart failure, palliative care referrals are often limited. This places a heavy burden on family caregivers, especially in the final stages of life and into bereavement. There has been little research exploring caregivers’ experiences at the end of life in this context, making this study necessary to address an important gap in understanding.What Were the Main Questions Studied?
The research aimed to explore:What are the experiences of end of life care for bereaved caregivers of people with heart failure?
Who Participated in the Study?
Seven individuals from across the UK who had cared for a family member with heart failure until their death took part in the study. All participants were bereaved caregivers who voluntarily agreed to be interviewed about their experiences.What Treatments or Interventions Did the Participants Take/Receive?
There were no treatments or medical interventions involved in this study. It was a qualitative research project based on personal interviews, and participants were asked to reflect on their past caregiving experiences.What Medical Problems (Adverse Reactions) Did the Participants Have?
As this was a non-clinical, interview-based study, there were no medical procedures or treatments given, and therefore no adverse reactions occurred.What Happened During the Study?
Participants were invited to take part in one-to-one interviews, which were conducted remotely by phone or video call. The interviews followed a semi-structured format, allowing participants to speak freely about their experiences of caregiving, the end-of-life period, and bereavement. Interviews were audio-recorded, transcribed, and analysed using Interpretative Phenomenological Analysis (IPA), a qualitative method used to understand how people make sense of significant life experiences.What Were the Results of the Study?
The study identified five overarching themes from participants’ experiences. Key findings included:- Many caregivers had limited knowledge of heart failure and were unprepared for the reality of the illness and its prognosis.
- Access to palliative care was often challenging, with families relying on ‘insider knowledge’ or informal networks.
- Caregiving was emotionally and physically demanding, affecting caregivers' health and well-being.
- Participants often felt unprepared for the dying process and unsupported after their loved one’s death.
- Bereavement was accompanied by emotional and social difficulties, and many felt neglected by the healthcare system once their caregiving role ended.How Has This Study Helped Patients and Researchers?
The insights from this study highlight critical gaps in care and support for caregivers of people with heart failure. The findings can help inform health and social care professionals, service providers, and policymakers about the challenges faced by caregivers and the need for improved access to palliative care and bereavement support. The research also contributes to the academic understanding of caregiving at the end of life and adds to the body of qualitative evidence in palliative care.Details of Any Further Research Planned
A publication is currently being prepared to share the findings in a peer-reviewed academic journal. Additionally, the research will be presented at the European Association for Palliative Care Conference in Helsinki in May 2025. Future work may involve developing interventions or resources to support caregivers based on these findings.Where Can I Learn More About This Study?
For more information or to request a copy of the lay summary or future publications, please contact Melanie Diggle.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
21/NW/0118
Date of REC Opinion
4 May 2021
REC opinion
Further Information Favourable Opinion