An Investigation into the Palliative Care Needs of Caregivers of People Living with Advanced Heart Failure in Ireland
Research Project Title
Exploring Dimensions of Inequality in Current Palliative Care Provision for Carers of People with Advanced Heart Failure in Ireland
Palliative Care, Advanced Heart Failure, Carers, Caregiver Burden, Quality of Life , Advance Care Planning and Communication
Heart failure (HF) is reaching epidemic proportions in Ireland and throughout the developed world. HF is the inability of the heart to eject blood around the body sufficiently and is considered as having the greatest negative impact on quality of life (QoL) when compared with other major chronic diseases. The long-term prognosis of HF is worse than that associated with the majority of cancers. However, research has indicated HF patients and their caregivers are less likely to access palliative care services compared to other life-limiting conditions, despite having similar needs. Informal caregivers of people with HF are often the spouse or partner, who may be of a similar age with their own health concerns.
Enhancing palliative care services and support to family members caring for HF patients has the potential to improve care and QoL for the patient, reduce caregiver burden and in addition reduce healthcare costs. It is vital therefore that the needs of people living with HF and their caregivers are examined in order to inform future interventions and services for these individuals. The aim of this study was to examine the palliative care needs of caregivers of people living with advanced HF in Ireland and to explore any relationship between this and a range of other factors including the patient’s clinical profile and support available. There were two key phases to the research design 1) postal survey with advanced heart failure patients and their informal caregivers and 2) face-to-face interviews with current and bereaved caregivers. Based on the research findings, five key recommendations were proposed.
Key Findings & Recommendations
This study illustrates that people with advanced HF are a hidden population due to a lack of databases containing clinical information, therefore their informal caregivers are an even harder to reach population. No official register of informal caregivers, caring for HF patients in Northern Ireland or the Republic of Ireland exists; they have been described as “invisible” to healthcare systems. Such informal caregivers are caring for their loved one 24-7 and are often responsible for making the decision to seek medical assistance, when the patient’s health worsens. HF patients require their informal caregivers support to manage symptoms and recognise signs of deterioration. Findings from this research suggest caring for a patient with advanced HF can have a significant impact on the caregiver’s overall QoL and they have a number of unmet needs. Caregivers expressed the need for improved service provision in the clinical care of their loved one, emotional support for them to cope with their caregiving role, improved communication from healthcare professionals and support communicating with the patient. The difficulties caregivers reported in the current study were predominantly related to poor communication from healthcare providers, whom reportedly do not always acknowledge the role informal caregivers play. Current caregivers expressed fear regarding “the future” and bereaved caregivers reported, on many occasions healthcare professionals did not encourage open channels of communication relating to the deteriorating condition of their loved one. A palliative approach should be adopted by healthcare professionals involved in the care of people living with HF, introducing aspects of palliative care early in the patient’s disease trajectory and then making referrals to specialist palliative care services when the patient is in the advanced stage of their illness. For successful integration of HF and palliative care services, roles and responsibilities for members of the multidisciplinary team need to be established. The training needs of healthcare professionals responsible for the care of patients living with advanced HF need to be addressed, to ensure they have the necessary communication skills to initiate sensitive conversations surrounding advance care planning (ACP) and the poor prognosis that’s inevitable in HF. Research is warranted to determine whether implementation of ACP in the care of people living with HF has the potential to address uncertainty and support the patient-caregiver dyad.
Not surprisingly, the bulk of caring in the community for people in the advanced stages of HF falls to the informal caregiver and burden was evident in this cohort of caregivers. The evidence on whether burden is associated with caregiver mortality is conflicting; strain associated with caregiving is a significant health concern and highlights the need for targeted interventions to support this group of people. This study found informal caregivers were not sure what support was available to them and how to access it. Evidence from this research indicates caregivers need accessible information relating to their loved one’s condition and what to expect in the future as well as improved access to services. Research indicates access to palliative care for HF patients is already suboptimal, putting a greater emphasis on the need for appropriate prognostic tools in HF, to ensure patients in the advanced stage of their illness are accurately identified and referred to specialist palliative care if required. The results from this study can inform the development of effective interventions for this group of informal caregivers to ensure better health outcomes, reduced burden and improved quality of life for caregivers, which in turn could benefit the patient and be more cost-effective for healthcare systems.
Study carried out Oct 2013 - Oct 2017
Principal Investigators: Prof Sonja McIlfatrick, Head of School of Nursing, University Ulster (UU) and Prof Donna Fitzsimons, Head of School of Nursing and Midwifery, Queen’s University Belfast (QUB).
Project Team: Dr Leanne Doherty (nee Breslin) (Postdoctoral Fellow).
This research was funded by the Health Research Board (HRB) and All Ireland Institute of Hospice and Palliative Care (AIIHPC) through its Palliative Care Research Network (PCRN).
Research Project Outputs:
Breslin L, McIlfatrick S, Fitzsimons D. The Challenge of Gaining Access to Informal Caregivers in the Advanced Heart Failure Population in Ireland. Eur J Palliative Care [Internet]. 2015 [cited 2018 Jan 29]; Available from: http://uir.ulster.ac.uk/31680/
McIlfatrick S, Fitzsimmons D, Breslin L. Earlier Integration of Palliative Care: Examining the Palliative Care Needs and Quality of Life of Carers for People Living with Advanced Heart Failure. Palliat Med [Internet]. 2016 Jun 11 [cited 2018 Jan 29];30(6):NP1-NP401. Available from: http://journals.sagepub.com/doi/10.1177/0269216316646056
Doherty LC, Fitzsimons D, McIlfatrick SJ. Carers’ needs in advanced heart failure: A systematic narrative review. Eur J Cardiovasc Nurs [Internet]. 2016 Jun 28 [cited 2018 Jan 29];15(4):203–12. Available from: http://journals.sagepub.com/doi/10.1177/1474515115585237
McIlfatrick, S, Doherty L, Murphy M, Dixon L, Donnelly P, MacDonald K & Fitzsimons D (2017) The importance of planning for the future: burden and unmet needs of carergivers in advanced heart failure: a mixed methods study. Palliative Medicine https://doi.org/10.1177/0269216317743958
Fitzsimons D., Doherty LC., Murphy M., Dixon L., Donnelly P., McDonald K. and McIlfatrick S. (2018) Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making. Journal of Cardiovascular Nursing, Volume (Epub ahead of print), 0889-4655. Doi: 10.1097/JCN.0000000000000516
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