The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper

Abstract

Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.

Design: A co-design process built on core concepts and ideas embedded in co-design methodology.

Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme.

Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.

Conclusion: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.

Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel.

Reporting methods: Consolidated criteria for reporting qualitative research (COREQ).

Patient or public contribution: Both informal carers and content creators were involved in developing the support programme.

Keywords: heart diseases; informal caregiving; information and communication technology; participatory design; web-based support.