Journal article
“Seeing the light in the shade of it”: primary caregiver and youth perspectives on using an inpatient portal for pain care during hospitalization
N Pope, S Jones, D Crellin, G Palmer, M South, D Harrison
Pain | Published : 2024
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 satisfactio..
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Funding Acknowledgements
The authors gratefully acknowledge participating parents, youth, and staff who gave their time and support. The primary author is a Ph.D. candidate and the grateful recipient of The Melbourne Research Scholarship and the Be Sweet to Babies studentship supporting her Ph.D. studies. She is also the recipient of the Vera Scantlebury Brown Child Welfare Memorial Trust Scholarship and the Australian Nurses Memorial Centre Prince Henry's Affiliates Scholarship. These funders have no role in the design and conduct of the study. In line with the Royal Children's Hospital, Melbourne Human Research Ethics Committee approval (approval ID: HREC/83902/RCHM-2022), data are not publicly available but a submission to access deidentified data can be made on request.