Palliative care study seeks informal caregivers

Research underway aims to improve end-of-life care in the country, while a new resource supports quality palliative care for aged care residents.

A University of South Australia research team is calling for people who have cared for a loved one at end of life to take part in a study exploring palliative care in rural settings.

The information gathered from informal carers will be shared with service providers and policy makers to help improve knowledge and access to palliative care in rural and remote communities.

Co-led by UniSA research student and registered nurse Marylouise Freeman, the team is specifically looking to explore the positive experiences of informal carers.

Marylouise Freeman

“Caregivers rarely have the chance to talk about their experiences of palliative care. Other than grief counselling, there’s usually very little opportunity to participate in something positive after the passing of a loved one,” said Ms Freeman.

“In this study, we’re specifically focused on the positive aspects of palliative care, and for carers to share the things that they remember working well for them and their loved one so they can be replicated in other rural settings.”

Rural health care is all-too-often painted in a negative light, added Ms Freeman. “We’re hoping to do the opposite and tap into the strengths so we can find ways to amplify what is working well.”

Conducted by UniSA’s Department of Rural Health and supported by The Hospital Research Foundation, the rural palliative care study is part of a larger research project – the Palliative Care Research Collaboration.

To be eligible to take part in what will be semi-structured interviews, participants must be 18 or older, a primary carer of someone who has died – and who received rural palliative care in the past two years – and able to share information about the positive aspects of the care experience.

Those wishing to express interest and find out more can email:

Palliative care resource launched for residential aged care

Meanwhile, Palliative Care Victoria – the state’s peak body for palliative and end-of-life care – has developed resources to enhance the quality of care of aged care residents.

Jointly funded by the federal government and the Victorian government’s Department of Health, the resource – Dignified and Respectful Decisions – aims to educate people about the importance of discussing end-of-life plans with their loved ones and how to effectively collaborate with aged care teams to improve living and dying in residential aged care.

Violet Platt

“Building stronger collaboration across all sections of the Victorian community, regardless of cultural backgrounds, with the aged care sector is fundamental to creating better, more dignified individualised care for our elderly population living in residential aged care facilities,” said Palliative Care Victoria CEO Violet Platt. “Not only are we able to respect a person’s wishes, we can also support an aged care and health sector under pressure by reducing futile actions which also makes sense economically.”

A recent report from the Department of Health and Aged Care found more than half of palliative care professionals – 54 per cent – believe one of the biggest barriers to providing successful end-of-life care is the lack of an established advance care plan, with clear directives from patients.

The Dignified and Respectful Decisions resources will guide patients and their families through the various medical and end-of-life decisions that may be required and encourages proactive planning to ease the decision-making process when the time comes.

Among the resources are checklists, wellbeing support information, advice on how to work with doctors and palliative care providers, and contacts of relevant support organisations. There is also a video featuring a carer talking about some of the challenges she faced when looking after her husband who was living with dementia.

“We plan to equip families with the support they need to make respectful and empowered decisions with and for their loved ones in aged care,” said Ms Platt. “Making informed decisions at the end of life which respects our loved ones is vitally important … these resources provide us with important touch points to help provide guidance at a challenging and emotional time.”

Dignified and Respectful Decisions resources can be accessed here.

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Tags: Dignified and Respectful Decisions, Marylouise Freeman, palliative care victoria, unisa,

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