In the UK, most people wish to be at home when they die. Unpaid carers (family and friends) play a key role in ensuring a home death and many are willing to be trained to administer as-needed subcutaneous injections for breakthrough symptoms, to ensure timely symptom control for the person they are caring for. A team in North Wales developed the CARiAD package to train and support such carers, a new practice to most of the UK.
It is hypothesised that a digital app may be beneficial for both carers and the healthcare teams. It could provide more guidance, improve data collection, help facilitate monitoring through the real-time collection of data and support audit data collection. Therefore the Helix Centre, Central North West London (CNWL) NHS Trust and the CARiAD team have collaborated to design and develop a mobile app. We acknowledge that a digital product will not be right for every carer but it is essential to understand whether a digital offering can deliver the intended benefits.
A user-centred design approach was adopted by conducting moderated usability sessions with carers who had previously given subcutaneous as-needed medications. Testing user flows, content and barriers of using paper and digital versions together. After each round, we synthesised the qualitative feedback and made improvements. A pre-pilot study of the app is commencing imminently which will inform a formal pilot study in CNWL of a digital-first offering. If successful a healthcare practitioner view will be developed to aid remote monitoring and support carers.
The design process worked as intended. Unforeseen usability and accessibility issues were identified. Iterative improvement of the app has delivered a product that is well aligned with carers’ perspectives and knowledge. We hope this will ensure that the app is easier and safer to use when supporting carers to administer and record as-needed subcutaneous injections.
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