Abstract
Introduction: User involvement is seen as a critical component to enhance quality in integrated care. In order to move towards more person-centred integrated health and social care, health and care services must be co-designed with users, their significant others, and communities. Despite the core intentions of co-design, to increase user participation in the development of new health and social care services, the concept of participation and how it unfolds within studies in integrated care with a co-design approach has rarely been addressed.
Aims, Objectives, Theory or Methods: This study aimed to describe how user participation manifests itself, including potential enablers or barriers to participation within a co‐design process involving patients, significant others, and healthcare professionals.
This study was conducted in the context of a co‐design process of a new person‐centred transition from hospital to continued rehabilitation in the home for people with stroke. The co-design process consisted of five half-day workshops over four months. The process was followed, and data were collected through observations during workshops, recorded reflections and semi-structured interviews and questionnaires. The data were analysed using qualitative content analysis.
Highlights or Results or Key Findings: Individual's participation in a co-design process manifested itself through the interaction of the participants and their skills to handle and adapt to different perspectives, roles and assignments. Ability to act within a team, competencies, creativity, and communication skills were important to consider when composing teams within design processes, as the composition of teams could both be an enabler and barrier to participation. Patients and significant others struggled to combine their binary roles as experienced-based experts and be accountable design team members. There were occasions where an uneven power balance became evident. Some patients felt inferior and considered healthcare professionals as the real experts. There were difficulties in bridging the experience-based perspective of users and healthcare professionals. However, when a shared understanding could be reached, it enabled equal participation. A reflexive process and ever-adaptive facilitation were crucial to meet individual and collective needs to mitigate the barriers and emphasise the enablers to participation.
Conclusions: Participation in co-design processes is not realised by only applying co-design methodology, and participation must be continuously assessed and reflected upon. Further, co-design must be seen as an ever-adaptive process to enable participants' participation by balancing roles and power and evoking different perspectives as a common ground for shared understanding.
Implications for applicability/transferability, sustainability, and limitations: This study provides knowledge on the core factors, elements, and values that need to be scrutinised and continuously adapted when conducting co-design processes to fulfil the methodology's core intentions, i.e., enable individual and collective participation in the co-design process.