Do end-of-life carers have unmet needs?

A new study is aiming to bring dignity and support to end-of-life patients and the people who care for them.

By Kate Horowitz

Curtin University has partnered with Silver Chain Hospice Care to trial a simple questionnaire that assess the physical, social and emotional needs of end-of-life carers.

Around 440 carers – in contact with the Perth-based service provider– will be involved in the trial, which aims to determine how best to support end-of-life caregivers.

The new assessment tool, The Carer Support Needs Assessment Tool (CSNAT), is a two-page questionnaire that formally assesses the needs of the carer.

Research support manager, Joanna Smith, explained how important it was for end-of-life palliative carers to receive support due to the numerous roles they must provide.

“Palliative care worldwide provides care to the whole person, not just physical needs but also their spiritual and psychosocial needs, as well as caring for the family,” Ms Smith said. “We want to make sure that we provide the best care for the family and the person being cared for.”

Ms Smith said home-based family care at the end-of-life stage involves significant emotional, social, financial and physical costs. Without significant support, potential caregivers may seek costly institutional forms of care.

The lack of rigorously tested and comprehensive assessment tools also compromises the ability of the service provider to offer adequate end of life care.

“The CSNAT looks at the needs of carers who are usually family members [who may make] caring more stressful. The purpose of the study is to identify any needs the carer may have; any problems or issues that are going to impact on caring at home and then we can put things in place, like extra services or other community organisations.

“If things aren’t in place to support the carer then the worst case scenario is that if a carer can’t cope then the person who is dying will end up in inpatient care.

“So what we try to do is provide support for the carer allowing people to die where they want to, which is most often at home.”

The project is a joint effort between Curtin University, Manchester University in the UK and the University of Victoria in Canada. It is part of the international collaboration on Family Caregiving Research in End of Life Care between Australia, UK and Canada. The CSNAT was developed by the UK team.

“We don’t know what the results of the study will be. It may be that we identify some carer needs not being met by anyone in the community or that Silver Chain has not even thought about providing.  Then we can work out how to put specific services in place to help the carer,” Ms Smith said.

Above: Professor Samar Aoun from Curtin Health Innovation Research Institute.

Professor Samar Aoun from the Curtin Health Innovation Research Institute’s WA Centre for Cancer and Palliative Care said a timely response to carer needs would save money and restore dignity to end-of-life care.

“People want to keep their dignity and die at home, surrounded by their family,” Professor Aoun said. “We know that carers are doing a great deal, but they don’t have enough support. Without more support for family carers, more dying people would be admitted to hospital, which is a very costly alternative.”
“We’re hoping with this tool we can demonstrate an improvement in carers’ wellbeing, bereavement outcomes and the likelihood of the patient achieving their preferred place of death.”

Tags: aged-care, ageing, carers, curtin-university, end of life, professor-samar-aoun, silver-chain,

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