The caring@home project team thanks all clinicians and carers who participated in the evaluation.
The evaluation has been extensive and indicates that the resources have been appreciated by clinicians and carers across all states and territories in Australia.
For this snapshot, we have focused on the carers’ experience of being trained and using the resources.
The majority of carers indicated that they were hesitant to take on the role of subcutaneous medicine management, but the desire to keep the person they were caring for at home outweighed concerns.
"to say that any carer should feel like they can handle the situation if they’ve got practice. It’s not a matter of just saying, 'oh, I couldn’t do that'…. our palliative care nurses are so caring and understanding and so willing to help somebody. I’m sure that they’d be the same right around the country. So, there’s no reason why people shouldn’t be able to do it."
Carers, through surveys and telephone interviews commented on the importance of having one-on-one training and noted that the relationship with the nurse was fundamental to its success. 24-hour nurse support was noted as a major facilitator of managing breakthrough palliative symptoms at home.
The caring@home resources were seen as a useful adjunct to the training, helping to reinforce what was learned.
A number of participants noted that the combination of the mixed-media resources and face-to-face training was key in the success of the package, and that the resources alone would not have been as helpful without the training.
In general, carers highlighted the quality of the resources. Resources were perceived to cater to different learning styles, support good protocol and act as a helpful prompt, were visually appealing, used easy-to-understand language, were well set-out, and helped facilitate comprehension.
“It’s such a wonderful thing to be able to have a choice and to have options. As I said, I feel lucky to give - to be able to give your loved one an option to be at home and I think the package really will ensure that people feel supported. I mean, I think it's just been gold star. “