Public involvement in mental health research enhances research quality. The use of citizen science methods in mental health research has been described as a conclusion of a movement towards increased public involvement; however, this field is in its early stages of development. Our objective was to create a theory of change (ToC) for how citizen science can be used to enhance mental health research quality.

Iterative consultation with the stakeholders of an existing citizen mental health science study, that is, change for citizen science to achieve co-production at scale (C-STACS: https://www.researchintorecovery.com/research/c-stacs/)

We co-developed a ToC through an iterative consultation with C-STACS stakeholders who were (a) representatives of mental health community organisations (n=10), individuals with public involvement experience (n=2) and researchers (n=5). In keeping with established ToC practice, entities were identified, including long-term impacts, outcomes needed to create an impact, stakeholder assumptions and indicators for tracking progress.

A desired primary long-term impact of greater co-production of research was identified between researchers and members of the public, which would create a secondary impact of enhancing public capacity to engage in citizen mental health science. We proposed long-term outcomes needed to enable this impact: (1) greater co-production of research objectives and pathways between researcher and the public, (2) greater embedment of citizen mental health science into funder processes (eg, the creation of specific funding calls for citizen mental health science proposals, (3) greater clarity on the boundaries between citizen science and other participatory approaches (eg, so that there is not loss of impact due to conceptual confusion between these, (4) increased knowledge around effective frameworks to enable mass public participation and (5) greater availability of technology platforms, enabling safe and accessible engagement with citizen mental health science projects.

The proposed ToC is grounded in the C-STACS project, but intended to be broadly applicable. It allows the continued formation of a community of practice around citizen mental health science and should be reviewed, as greater knowledge is developed on how citizen mental health science creates change.

Children with medical complexity (CMC) frequently experience acute deterioration requiring paediatric intensive care unit (PICU) hospitalisation. Collaboration between families and healthcare professionals (HCPs) is vital yet often challenging, suggesting a new care approach is needed. This study explored the PICU care experiences of CMC, parents and HCPs and identified common priorities and practice changes to enhance care.

An experience-based co-design (EBCD) approach was used. Semistructured interviews were conducted with CMC and parents (stage 1) and HCPs (stage 2). A co-design event with parents and HCPs followed (stage 3).

Interviews took place in family homes, hospital meeting rooms and virtually. The co-design event took place at the hospital.

Interviews: CMC and parents (n=21, 13 families) within 1 year of their most recent PICU discharge. PICU and complex care service HCPs (n=15). Co-design event: parents and HCPs (n=22). Maximum variation sampling was used.

Stage 1: Child and family-related themes included becoming known, becoming a parent caregiver or child care receiver, establishing caregiver relationships, and expecting a responsive and dignified caregiving environment. Stage 2: HCP-related themes included adapting to a different care approach, positioning parents as collaborators, navigating personal connections, and providing continuity of care. Stage 3: Two videos (sharing child and family perspectives, and HCPs’ perspectives) were produced to promote discussion at the co-design event. Common care priorities included increase HCPs’ awareness of who the child is when they are well; improve interdepartmental communication; enhance HCPs’ understanding of families’ expertise and needs; enhance parent-HCP partnerships and develop HCP training programmes. Potential practice changes were identified.

Participants identified the need for a collaborative approach to care for critically ill CMC, integrating the expertise of children, parents and HCPs. EBCD can help ground the perspectives and needs of HCPs, children and families in future PICU patient and family-centred care interventions.