Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus
- Bray, Lucy, Carter, Bernie, Kiernan, Joann, Horowicz, Ed, Dixon, Katie, Ridley, James, Robinson, Carol, Simmons, Anna, Craske, Jennie, Sinha, Stephanie, Morton, Liza, Nafria, Begonya, Forsner, Maria, Rullander, Anna-Clara, Nilsson, Stefan, Darcy, Laura, Karlsson, Katarina, Hubbuck, Cath, Brenner, Maria, Spencer-Little, Sian, Evans, Kath, Rowland, Andrew, Hilliard, Carol, Preston, Jennifer, Leroy, Piet, Roland, Damian, Booth, Lisa, Davies, Jean, Saron, Holly, Peck, Blake
- Authors: Bray, Lucy , Carter, Bernie , Kiernan, Joann , Horowicz, Ed , Dixon, Katie , Ridley, James , Robinson, Carol , Simmons, Anna , Craske, Jennie , Sinha, Stephanie , Morton, Liza , Nafria, Begonya , Forsner, Maria , Rullander, Anna-Clara , Nilsson, Stefan , Darcy, Laura , Karlsson, Katarina , Hubbuck, Cath , Brenner, Maria , Spencer-Little, Sian , Evans, Kath , Rowland, Andrew , Hilliard, Carol , Preston, Jennifer , Leroy, Piet , Roland, Damian , Booth, Lisa , Davies, Jean , Saron, Holly , Peck, Blake
- Date: 2023
- Type: Text , Journal article
- Relation: European Journal of Pediatrics Vol. 182, no. 10 (2023), p. 4707-4721
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- Description: Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020–2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children’s procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. © 2023, The Author(s). **Please note that there are multiple authors for this article therefore only the name of the first 30 including Federation University Australia affiliate “Blake Peck” is provided in this record**
- Authors: Bray, Lucy , Carter, Bernie , Kiernan, Joann , Horowicz, Ed , Dixon, Katie , Ridley, James , Robinson, Carol , Simmons, Anna , Craske, Jennie , Sinha, Stephanie , Morton, Liza , Nafria, Begonya , Forsner, Maria , Rullander, Anna-Clara , Nilsson, Stefan , Darcy, Laura , Karlsson, Katarina , Hubbuck, Cath , Brenner, Maria , Spencer-Little, Sian , Evans, Kath , Rowland, Andrew , Hilliard, Carol , Preston, Jennifer , Leroy, Piet , Roland, Damian , Booth, Lisa , Davies, Jean , Saron, Holly , Peck, Blake
- Date: 2023
- Type: Text , Journal article
- Relation: European Journal of Pediatrics Vol. 182, no. 10 (2023), p. 4707-4721
- Full Text:
- Reviewed:
- Description: Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020–2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children’s procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. © 2023, The Author(s). **Please note that there are multiple authors for this article therefore only the name of the first 30 including Federation University Australia affiliate “Blake Peck” is provided in this record**
Health literacy among children living with a long-term condition : ‘what I know and who I tell’
- Peck, Blake, Bray, Lucy, Dickinson, Annette, Blamires, Julie, Terry, Daniel, Carter, Bernie
- Authors: Peck, Blake , Bray, Lucy , Dickinson, Annette , Blamires, Julie , Terry, Daniel , Carter, Bernie
- Date: 2023
- Type: Text , Journal article
- Relation: Health Education Journal Vol. 82, no. 5 (2023), p. 487-504
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- Description: Background: Little is known about the health literacy of children living with long-term conditions. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators to sharing information about their condition with others. Design: Child-centred qualitative arts-based approach with children aged 6–12 years. Setting: Children participating in the study came from three countries – the UK, Australia and New Zealand. Method: A participatory arts-based qualitative child-centred approach prompted children to draw, label and use stickers, body-outlines and collage to describe elements central to health literacy. This encompassed their long-term condition, their understanding of their condition, its management and decision-making associated with sharing information about their condition with others. The sessions were audio-recorded, and reflexive thematic analysis was undertaken. Results: Four central themes related to key elements of child health literacy: (1) pragmatic understanding – what it feels like and what happens in my body; (2) management regime – what do I have to do to keep on going; (3) information sharing – I don’t tell random people; and (4) benefits of sharing – they’ve got my back. Conclusion: Children indicated a pragmatic or process type understanding of their condition and its management. Children were discerning about who they shared information about their condition with, but tended to establish a network of well-informed peers capable of providing support if needed. Despite gaps in children’s health literacy, parents and families have an important role to play in checking children’s understandings and developing critical health literacy. © The Author(s) 2023.
- Authors: Peck, Blake , Bray, Lucy , Dickinson, Annette , Blamires, Julie , Terry, Daniel , Carter, Bernie
- Date: 2023
- Type: Text , Journal article
- Relation: Health Education Journal Vol. 82, no. 5 (2023), p. 487-504
- Full Text:
- Reviewed:
- Description: Background: Little is known about the health literacy of children living with long-term conditions. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators to sharing information about their condition with others. Design: Child-centred qualitative arts-based approach with children aged 6–12 years. Setting: Children participating in the study came from three countries – the UK, Australia and New Zealand. Method: A participatory arts-based qualitative child-centred approach prompted children to draw, label and use stickers, body-outlines and collage to describe elements central to health literacy. This encompassed their long-term condition, their understanding of their condition, its management and decision-making associated with sharing information about their condition with others. The sessions were audio-recorded, and reflexive thematic analysis was undertaken. Results: Four central themes related to key elements of child health literacy: (1) pragmatic understanding – what it feels like and what happens in my body; (2) management regime – what do I have to do to keep on going; (3) information sharing – I don’t tell random people; and (4) benefits of sharing – they’ve got my back. Conclusion: Children indicated a pragmatic or process type understanding of their condition and its management. Children were discerning about who they shared information about their condition with, but tended to establish a network of well-informed peers capable of providing support if needed. Despite gaps in children’s health literacy, parents and families have an important role to play in checking children’s understandings and developing critical health literacy. © The Author(s) 2023.
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