There is an urgent need for government, researchers and aged care staff to come together to establish a formal approach to the grief and loss experienced by families in the residential aged care system, a Flinders University-led review has found.
“Families whose relatives enter the aged care system often start grieving from the moment their family member is placed into residential care and it grows from there,” says study lead author Dr Priyanka Vandersman, a Senior Research Fellow at Flinders University’s Research Centre for Palliative Care, Death and Dying.
“Our research shows that right from the start, how families are treated and assisted throughout this complex process has a profound impact on how they experience this grief.”
The study reviewed 35 papers examining the grief, loss, and bereavement experience of family caregivers of those entering, living and dying in residential aged care, as well as related interventions.
Findings showed the quality of care provided to the resident at the end of their life and after death strongly influenced a family’s grief reaction. Furthermore, the study highlighted how support, including from social workers, as well as educational interventions also impacted their experience.
“We already knew that good quality care provided to a dying person can lead to a good grief experience for their family, but our review went further and showed it’s only one piece of a much larger jigsaw puzzle,” says Dr Vandersman.
“Involving families in the older person’s care, having open conversations about their loved ones’ health decline and deterioration, care options and choices, as well as helping them prepare for death, were the other key elements that influenced the family caregivers’ grief.”
The authors say this demonstrates there is a need for a greater focus from the residential aged care sector, government agencies and research entities to work together in developing and implementing a comprehensive approach to grief, loss, and bereavement care.
This should include service policies, staff training and support, as well as family resources to support everyday care practices.
“Recognising the emotional experiences and support needs of families and carers can enhance our understanding of the ageing, caring, dying, grieving pathway for older people and their families,” suggests coauthor, Professor Jennifer Tieman, Director of the Research Centre for Palliative Care, Death and Dying.
“We need to invest in leadership within the sector, along with service initiatives and staff education, if we are to facilitate timely and meaningful discussions around end-of-life care needs.
“Communication and discussions can help residents and families by providing support and guidance around administrative and logistical decisions, while also ensuring they receive responsive and proactive care throughout the person’s final months, weeks, and days of life”.
The paper ‘The matter of grief, loss and bereavement in families of those living and dying in residential aged care setting: A systematic review’ by Priyanka Vandersman, Amal Chakraborty, Georgia Rowley and Jennifer Tieman is published in the journal Archives of Gerontology and Geriatrics. DOI: 10.1016/j.archger.2024.105473. This review is one of a series of studies exploring grief, loss and bereavement experiences of the families of those in residential aged care.
The work was supported by the South Australian Government for Health and Wellbeing under the Palliative Care 2020 Grants Program.