Study finds caregiving can affect quality of life for up to a year after loss

Family members who have been the primary carer for a dying loved one may experience considerable grief and poor health and quality of life for several months after the person has died, new research led by Curtin University has found.

The research, published in Palliative Medicine, aimed to determine whether family carers’ grief, general health and quality of life worsened following a loved one’s death, compared to non-carers. It also examined whether the grief a carer experienced while caring could predict their grief following the death.

Lead author Associate Professor Lauren Breen, from the School of Psychology at Curtin University, said family carers are integral to providing end-of-life care for people receiving palliative care, but the tasks of caregiving can have a significant and lasting impact on them.

“Caring for a dying loved one can be a full-time and exhaustive commitment, but the grief, general health and quality of life that the carer experiences before and after death can sometimes be overlooked,” Associate Professor Breen said.

“By measuring how carers were feeling in the time period leading up to the death, and then at three different time periods following the death, we were able to show that it took nine to 10 months for the carers’ grief, general health, and quality of life to return to ‘normal’.

“We also found that while caring, the carers’ quality of life and general health was low and their grief was similar to what they experienced three to four months following the death.”

Associate Professor Breen explained that the findings highlighted the need for services to provide adequate support for carers.

“Our findings present an opportunity for palliative care research and practice to refocus efforts towards supporting carers along the caring and bereavement trajectory,” Associate Professor Breen said.

“Our findings show that tailored support is needed to meet the specific needs of carers and that this should be available both before and after the death. Interventions are needed to help carers prepare for the death, improve their health and quality of life, and promote adaptive grieving.”

The research, which was funded by an Australian Research Council Discovery Early Career Researcher Award, was co-authored by researchers from Curtin University, La Trobe University, and the University of Western Australia.

The research paper titled, ‘Effect of caregiving at end of life on grief, quality of life, and general health: a prospective, longitudinal, comparative study,’ can be found online here.