Co-developing a Paediatric Patient Reported Experience Measure: The Perspectives of Children and Young People

Authors

Karlen R. Barr, Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Sydney, NSW, Australia AND Faculty of Medicine, School of Psychiatry, University of New South Wales, Sydney, NSW, AustraliaFollow
Jessica Nikolovski, NHMRC Clinical Trials Centre, University of Sydney, Sydney, Australia AND Faculty of Medicine and Health, Susan Wakil School of Nursing and Midwifery, Sydney Quality of Life Office (SQOLO), University of Sydney, Sydney, AustraliaFollow
Les White, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia AND Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, AustraliaFollow
Sarah Elliott, Children's Healthcare Australasia, ACT, Mitchell, AustraliaFollow
Lynn McCartney, The Sydney Children's Hospitals Network, Sydney, NSW, AustraliaFollow
Claire Treadgold, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia AND Starlight Children's Foundation, Sydney, NSW, AustraliaFollow
Barb Vernon, Children's Healthcare Australasia, ACT, Mitchell, AustraliaFollow
James R. John, Faculty of Medicine, School of Psychiatry, University of New South Wales, Sydney, NSW, Australia AND Ingham Institute for Applied Medical Research, Liverpool, NSW, AustraliaFollow
Valsamma Eapen, Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Sydney, NSW, Australia; Faculty of Medicine, School of Psychiatry, University of New South Wales, Sydney, NSW, Australia; AND Ingham Institute for Applied Medical Research, Liverpool, NSW, AustraliaFollow

Abstract

Paediatric Patient Reported Experience Measures (PREMs) are tools that capture what children and young people (CYP) value in their healthcare and promote their involvement in clinical decision-making. A standardised paediatric PREM could improve quality of care for CYP across hospital settings, but CYP are rarely included in the development of PREMs. This study aimed to explore CYP's perspectives regarding their experiences of hospitals as the initial stage of developing the first self-reported paediatric PREM for use in Australia, including the perspectives of vulnerable populations. Individual interviews were conducted with 55 CYP from a diverse range of sociocultural backgrounds, across six Australian hospitals. Interviews were conducted by `Captain Starlight', professional performers who engage with children and positively impact their hospital experience. Reflexive thematic analysis was used to analyse interview responses. CYP favoured hospital experiences where they were included in decision making, had positive relationships with hospital staff, and had effective care and pain management. CYP also discussed the importance of interacting with family and friends, having fun activities, and having a comfortable hospital environment including privacy, decorations, and familiar food. Many CYP indicated that they preferred to provide feedback to the hospital verbally. The needs of CYP must be at the forefront of developing paediatric PREMs. Our co-design approach identified key components of proposed paediatric PREMs. The next stages will be to determine age-group specific question sets, followed by their piloting and validation. Future research will be required to evaluate and monitor the effectiveness of these PREMs.

Recommended Citation

Barr KR, Nikolovski J, White L, Elliott S, McCartney L, Treadgold C, Vernon B, John JR, Eapen V. Co-developing a Paediatric Patient Reported Experience Measure: The Perspectives of Children and Young People. Patient Experience Journal. 2024; 11(3):64-72. doi: 10.35680/2372-0247.1924.

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