Co-design of youth appropriate services for young people with rheumatic fever/rheumatic heart disease in Counties Manukau District.

Abstract

To co-design a rheumatic fever service model which enables young people with acute rheumatic fever/rheumatic heart disease (ARF/RHD) and their families to access the health and wellbeing services they need. Co-design, a collaborative and participatory approach, was used to gather experiences and ideas from 21 consumers and 30 health professionals. Thematic analysis was undertaken. Māori and Pacific patients and their whānau/aiga identified the importance of whānau/aiga support and involvement throughout their ARF/RHD journey. They described that the way care was delivered was often frustrating, fragmented and lacked effective communication. Participants expressed the need for information to improve their understanding of ARF/RHD. Health professionals identified the need for better continuity of care and felt that they were currently working siloed from other professionals with little visibility of other roles or opportunity for collaboration. The ideas for improvement were grouped into themes and resulted in development and prototyping of peer support groups, patient and staff education resources, clinical dashboard and pathway development, and an enhanced model of care for delivery to patients receiving penicillin prophylaxis. The co-design process enabled consumers and staff of ARF/RHD services to share experiences, identify ideas for improvement, co-design prototypes and test initiatives to better support the needs of those delivering and receiving ARF/RHD services.