Uncovering an invisible network of palliative care

Uncovering an invisible network of palliative care
Palliative care. Credit: Shutterstock

Day-to-day palliative care in the community is mainly delivered by an "invisible network" of extended family members, friends and neighbours, Flinders University research shows.

Using data from the South Australian Health Omnibus Survey from 2001 to 2007 where more than 3,000 South Australians participate in in-depth interviews each year, the study aimed to identify the key people, besides health professionals, who provide end of life care and support, including bathing, feeding and administering medications, to those dying at home.

Co-author Flinders Professor David Currow said extended , neighbours and friends accounted for more than half (55.9 per cent) of the 2,028 identified hands-on caregivers, providing more hands-on care than first-degree relatives.

"As expected, one cohort of caregivers was those usually identified in the medical records; first-degree relatives, including spouses/partners, parents, adult children or siblings," Professor Currow, based in the Discipline of Palliative and Supportive Services, said.

"Yet we also identified a larger cohort of 'invisible' contributors to end of life care – extended family members, including grandparents, aunts, uncles, nieces and nephews, as well as friends, neighbours and community members," he said.

Professor Currow said the reason why extended family members, neighbours and friends provided the majority of care was because "in caring for someone at the end of life, it is a time the dying person's whole network comes together to provide support and care for the person who is dying and for each other".

He said the invisible network was far more likely to undertake their role for shorter periods of time when compared with first-degree relatives.

"This means the invisible network really contributes in the last weeks and months of a person's life in a way that has not been quantified before."

Other findings showed men were just as active in providing care as women. Importantly, the invisible network also spanned all age groups, with more than one third of caregivers under the age of 35.

Professor Currow said the research highlights the need for to create specific ways of identifying and engaging all those who provide care for someone at the end of life to ensure each person receives adequate support as they take on demanding roles.

"Most studies rely on reports from the spouse or identified next-of-kin, which has limited the ability to identify the broader social networks of support.

"These networks are crucial in supporting long-term caregivers for people at the end of life, especially when a person's care needs become more intense, but they are mainly invisible to the health team, which is of great concern.

"Changes to the medical record to identify the extent of potential social support is one way to help teams reposition the focus of their psychosocial care."

The research, titled Uncovering an invisible network of direct caregivers at the end of life: A population study, was undertaken by Flinders University researchers Dr Kate Burns, Professor Amy Abernethy, Professor Currow and Ms Lora Dal Grande from the University of Adelaide and published in the peer reviewed journal Palliative Medicine.

More information: The complete study is available online: pmj.sagepub.com/content/27/7/608.full

add to favorites email to friend print save as pdf

Related Stories

Early palliative care avoids emergency stress

Sep 03, 2013

Cancer patients who receive early access to community-based palliative care are less likely to go to the emergency department coming towards the end of their life, according to Curtin University research.

Recommended for you

Preterm children's brains can catch up years later

2 hours ago

There's some good news for parents of preterm babies – latest research from the University of Adelaide shows that by the time they become teenagers, the brains of many preterm children can perform almost as well as those ...

Mortality rates increase due to extreme heat and cold

2 hours ago

Epidemiological studies have repeatedly shown that death rates rise in association with extremely hot weather. The heat wave in Western Europe in the summer of 2003, for example, resulted in about 22,000 extra deaths. A team ...

It takes more than practice to excel, psychologist reports

3 hours ago

Case Western Reserve University's new assistant professor of psychology Brooke N. Macnamara, PhD, and colleagues have overturned a 20-year-old theory that people who excel in their fields are those who practiced the most.

User comments