“Seeing the light in the shade of it”: primary caregiver and youth perspectives on using an inpatient portal for pain care during hospitalization

Abstract

Studies from multiple countries report that most hospitalized children, especially the youngest and sickest, experience pain that is often severe yet inadequately treated. Evidence suggests this can lead to immediate and lifelong consequences affecting children, families, and communities. Partnership and shared decision-making by children, families, and clinicians is the ideal pediatric healthcare model and can improve care quality and safety, including pain care. A growing evidence base demonstrates that inpatient portals (electronic personal health record applications linked to hospital electronic medical or health records) can improve child and family engagement, outcomes, and satisfaction during hospitalization. This study examined the perspectives of caregivers of hospitalized children and of hospitalized youth about using an inpatient portal to support their engagement in pain care while in hospital. A qualitative descriptive study design was used and 20 participants (15 caregivers and 5 youth) with various painful conditions in one pediatric hospital participated in semistructured interviews. The authors applied a reflexive content analysis to the data and developed 3 broad categories: (1) connecting and sharing knowledge about pain, (2) user-centred designs, and (3) preserving roles. These findings outlined caregiver and youth recommendations for portal configurations that deeply engage and empower children and families in pain care through multidirectional knowledge sharing, supporting caregiver and clinicians' roles without burdening, or replacing human interaction implicit in family-centered pain care. Further research should measure the impact of portals on pain-related outcomes and explore the perspectives of clinicians.