Patient and family engagement strategies for children and adolescents with chronic diseases: A review of systematic reviews

Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches

“…Data from the present study indicated a need for greater engagement of young people in the inception and creation of engagement strategies about safety related to direct care, as well as health service processes and policy. These findings reflected a recent review which noted that young people with chronic conditions are increasingly encouraged to participate in conversations and decision‐making about their care and highlighted the limited evidence about engaging with young people about systemic or governance issues 27 . Opportunities for young people to engage in safety at direct care and service systems or governance levels, are required across both paediatric and adult health services and need to be inclusive of diverse and minority populations 8,43 .…”

“…Tailored strategies to engage with young people at the point of direct care may benefit from a focus on facilitating sustained quality relationships between young people and service providers, this is particularly so for young people from diverse cultural backgrounds, or who have diverse learning or communication needs 26 . Establishing collaborative, consistent relationships is particularly important for young people experiencing chronic conditions such as cancer 27,28 . Principles established in existing work could be useful to guide more inclusive strategies and approaches to engagement about safety 25,26 .…”

“…25,26 The benefit of digital technologies to foster ongoing connection was identified in our study reinforcing this is an area for further investigation. 29 The responsibility of service providers to develop relationships with young people to tailor communication in cancer care has been highlighted, 27 as having the benefits of establishing a consistent point of contact within the healthcare service for young people to access between appointments through interventions such as cancer navigators. 24 Collaborative research is required to increase understanding about the strategies that may be effective to facilitate engagement, and how young people can be equipped to raise safety issues.…”

The use of virtual tools in narrowing the impact of health disparities in neurology

“…Le Pichon et al 10.3389/fped.2022.1028833 successfully applied, using three examples targeting different areas of need in the management of patients with epilepsy.…”

“…In the second example we demonstrate the asynchronous use of YouTube to facilitate patient and family education and engagement in the care of children and youth with epilepsy (CYE). Family engagement has been shown to have significant impacts on the care of children with chronic diseases, including improved compliance with medication regimen, disease outcome, and quality of life (10). Family engagement is contingent on a basic understanding of the illness that affects the children.…”