Background Huntington’s disease (HD) family carers face a unique and overwhelmingly high care burden. They commonly suffer physical and mental exhaustion, frustration, and financial difficulties, which results in a heavy toll on family relationships and cohesiveness. This impacts the ability of carers to provide care, as well as carers’ and patients’ quality of life.
Aim We aimed to examine how current mobile and web technology can help family carers reduce their care burden, and help HD care professionals to provide better care.
Method Independent project team Kowhai consulted patients, families, the EHDN Quality of Life Working Group, and other HD groups. We used Design-Thinking methodology to examine the problems faced by carers, then prototype potential solutions, in order to iterate toward a production app and web solution.
Results Interviews with carers revealed that the key issues faced were the lack of access to care professionals and services with HD expertise, driving their patient’s quality-of-care while being exhausted, being unsure about what information to capture and how to share it with multiple care professionals, difficulty finding authoritative HD expert care guidance in multiple languages quickly when required. Carers also reported there was little self-care guidance to inform better management of their health as carers, and difficulties communicating and coordinating care activities amongst several family carers.
Conclusion Kowhai have identified a common set of HD family carer and care professional requirements. This will form the basis of developing a prototype mobile and web app for enhancing patient care and reducing carer burden.
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