A self‐portrait: Design opportunities for a tool that supports children's involvement in brain‐related health care

Abstract

Introduction Paediatric patients with disorders that involve brain functioning are particularly vulnerable with respect to including them in shared decision‐making. Current tools are mostly paper or digital patient information. We lay the groundwork for improving engagement with a concept that we coined ‘the Self‐Portrait’. The main goals were to identify (1) obstacles and (2) design parameters that enable patient participation. Methods A research‐through‐design approach was utilized in nine patients with brain‐related disorders (4–12 years), 15 parents and 15 medical professionals, involving contextual research (interviews and observations) within the paediatric hospital and patients' homes and codesign. Sensitizing materials and early instances of design solutions were deployed as catalysts for communication. Five rounds of enriched interviews and design reviews were thematically analysed to answer the research questions. Results Obstacles to child involvement were related to children's level of understanding, the time and energy necessary for information processing and lack of perceived relevance of the information. Patients' engagement is supported by design features that extend the time frame of interaction beyond the consultation, transfer information interactively and give control and influence during the consultation. Conclusion Obstacles were detected that complicate child engagement, which differ between stakeholders. Promising design features were identified that have the potential to play an important role in enabling active child involvement. These findings show that applying principles of human‐centred design research and codesign can bring together patients, parents and medical professionals around a tool that provides a shared language and focus, which are prerequisites to increase child engagement. Patient or Public Contribution Patients, parents and clinicians contributed as design informants during contextual research and design reviews. Clinicians provided feedback on the initial outcomes of thematic analysis. Two researchers assisted in consensus sessions during the thematic analysis.

Disrupting patterns of exclusion in participatory spaces: Involving people from vulnerable populations

“…This includes Heerings et al's 42 adaptation of experience‐based codesign to involve people with independent living experiences—people with ID, serious mental illness and older people—in a participatory quality improvement initiative. Hudon et al's 35 adaption of patient‐reported outcome measures, a primary tool in the philosophy of patient‐centred care so that the administration of the tool gained sensitivity without compromising its psychometric properties, and Meulendijks et al 41 move beyond the status quo of paper or digital booklets to the involvement of children with brain injury in care decisions by developing wonderfully innovative brain puzzles and avatars.…”

“…First, we consider who is in spaces for sharing decisions about research, services and policy in this special issue. There are papers with lead authors from seven countries: the United Kingdom, [22][23][24][25][26][27][28] Australia, [29][30][31][32][33] Canada, [34][35][36][37][38] the United States, 39,40 the Netherlands, 41,42 France 43 and Ecuador. 44 There are important examples involving people who experience homelessness, 22,23,34 people who have disabilities, 26,41,42 people who live in socioeconomically disadvantaged circumstances 35,37 and people who are migrants and/or from ethnic minority groups.…”

“…There are papers with lead authors from seven countries: the United Kingdom, [22][23][24][25][26][27][28] Australia, [29][30][31][32][33] Canada, [34][35][36][37][38] the United States, 39,40 the Netherlands, 41,42 France 43 and Ecuador. 44 There are important examples involving people who experience homelessness, 22,23,34 people who have disabilities, 26,41,42 people who live in socioeconomically disadvantaged circumstances 35,37 and people who are migrants and/or from ethnic minority groups. 25,31,36 There are also papers involving people with diabetes who experience stigma because of their condition 30 and COVID vulnerable populations, such as those with genetic, undiagnosed and rare disorders.…”

“…Second, what kind of methods are used in projects based on these partnerships? The papers report systematic reviews, [23][24][25] original research using qualitative, quantitative and mixed-methods studies 26,[29][30][31][34][35][36][37][39][40][41][42] and reflective practice. 22 This resonates with a key finding in the wider literature about meaningful partnerships 3,4 : collaborative research orientation is the core issue rather than the nature of the methods being used.…”