Support for carers and families

If the carer decides to take on this role, a nurse will provide one-on-one training to teach them what they need to know.

Many resources have been developed by caring@home to support nurses in delivering this training. The most important are the online education modules for registered nurses and the online education module for Aboriginal Health Workers.

You can also find resources for carers – including step-by-step guides, the carers handbook, a practice demonstration kit, videos, and a competency checklist. Use the matrix above to help choose the right resources. These resources are designed to support nurses in teaching carers how to manage symptoms and provide personal care at home.

The carer keeps these resources in the home for easy reference. They are trained and supported by the nursing service, GP, and pharmacist, and have access to 24-hour phone support from medical professionals.

Clinical judgement is necessary to determine which resources are most appropriate for the individual learning needs of each carer.

Teaching carers requires an initial time commitment of 30 to 60 minutes. The exact time needed will vary depending on individual circumstances, but this investment often saves time later – as well-prepared carers typically require fewer phone calls and call-outs.

The role of giving subcutaneous medicines is voluntary. Nurses should clearly communicate this to carers and emphasise that they can stop at any time. The caring@home Information for Carers brochure is a helpful resource to support this conversation.

Conversations about giving subcutaneous medicines to help manage breakthrough symptoms should not occur in isolation. Instead, nurses – using their clinical judgement – should have these iterative conversations in the context of the preparatory discussions they are already having about recognising clinical changes and deterioration in patients who are dying.

Patients and families can become very distressed if symptoms are not managed in a timely manner. If a patient and carer are waiting for a 24-hour service to arrive, there is a risk that the patient will remain in distress until support is available.

Some services report that after-hours response times can be lengthy, which may lead to increased distress for both patients and carers. In addition, many patients and carers may not have access to a 24-hour home visiting service at all.

For patient safety and carer confidence, the caring@home resources must only be used by services that offer a 24-hour on-call phone number. This ensures carers can access appropriate clinical advice about managing subcutaneous medicines when needed.

Focus group interviews with carers who used the resources found that they valued the reassurance of having a 24-hour contact number – even if they didn’t end up using it.

The Guidelines for the Handling of Palliative Medicines in Community Services can be used by clinical services to inform the development of protocols and procedures tailored to their specific needs. These guidelines are applicable across all jurisdictions in Australia.