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Family carer support – a must during end-of-life care

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Curtin University research has highlighted the importance of supporting family carers to identify their personal requirements in end-of-life care.

Professor Samar Aoun from Curtin’s School of Nursing, Midwifery and Paramedicine said family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for carers, and evidence suggests that good support can improve carer psychological outcomes.

“As the primary focus of palliative-care service is on the patient, a family carer’s assessment of support needs is often informal and undocumented,” Professor Aoun said.

“Family carers are also often reluctant to express their own needs and unlikely to feel these are legitimate. This means their support needs are less ‘visible’ and can see them missing out on much needed support.”

In response to this gap, Curtin worked to evaluate the Carer Support Needs Assessment Tool (CSNAT) which was developed to encompass the physical, psychological, social, practical, financial and spiritual support needs that should be assessed and addressed for family carers of terminally ill people.

The study investigated the impact of using the CSNAT to identify and address support needs in end-of-life home environment, on family carer outcomes.

The CSNAT is designed to be a carer-led assessment tool that is facilitated by the nurse rather than being led by the nurse.

“It was evident in this trial that those who received the CSNAT intervention had a significant reduction in carer strain while looking after their loved ones compared to those who did not receive the intervention,” Professor Aoun said.

“In total, 322 family carers participated in the trial, in intervention or control groups.  At the end of the study, the intervention group (233 participants) provided feedback to the research nurse about using the CSNAT and described feelings of validation, reassurance and empowerment.

“Issues identified as priorities included, what to expect in the future, having time for yourself in the day, and dealing with your feelings and worries.

“The CSNAT approach provided family carers the opportunity to ask for help and therefore legitimise their own support needs as separate from those of the patients.”

The CSNAT intervention was carried out in collaboration with the Silver Chain Hospice Care Service in Western Australia.

Results of the study were published in Palliative Medicine and PLos One and are available upon request.

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