Involving children and young people in paediatric research priority setting: a narrative review
被引:4
|
作者:
Postma, Laura
论文数: 0引用数: 0
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机构:
Univ Groningen, Fac Med Sci, Groningen, Netherlands
Univ Med Ctr Groningen, Dept Pediat, Groningen, NetherlandsUniv Groningen, Fac Med Sci, Groningen, Netherlands
Postma, Laura
[1
,2
]
Luchtenberg, Malou L.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Med Ctr Groningen, Dept Pediat, Groningen, Netherlands
Med Ctr Leeuwarden, Dept Pediat, Leeuwarden, NetherlandsUniv Groningen, Fac Med Sci, Groningen, Netherlands
Luchtenberg, Malou L.
[2
,3
]
Verhagen, A. A. Eduard
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机构:
Univ Med Ctr Groningen, Dept Pediat, Groningen, Netherlands
Univ Med Ctr Groningen, Groningen, NetherlandsUniv Groningen, Fac Med Sci, Groningen, Netherlands
Verhagen, A. A. Eduard
[2
,4
]
Maeckelberghe, Els L.
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h-index: 0
机构:
Univ Med Ctr Groningen, Dept Pediat, Groningen, NetherlandsUniv Groningen, Fac Med Sci, Groningen, Netherlands
Maeckelberghe, Els L.
[2
]
机构:
[1] Univ Groningen, Fac Med Sci, Groningen, Netherlands
[2] Univ Med Ctr Groningen, Dept Pediat, Groningen, Netherlands
[3] Med Ctr Leeuwarden, Dept Pediat, Leeuwarden, Netherlands
[4] Univ Med Ctr Groningen, Groningen, Netherlands
Data Collection;
Ethics;
INVOLVEMENT;
PATIENT;
IMPACT;
D O I:
10.1136/bmjpo-2022-001610
中图分类号:
R72 [儿科学];
学科分类号:
100202 ;
摘要:
ObjectiveThe objective of this study is twofold: first, to describe the methods used when involving children and young people (CYP) in developing a paediatric research agenda and, second, to evaluate how the existing literature describes the impact of involving CYP. We distinguish three forms of impact: impact on the research agenda (focused impact), impact on researchers and CYP (diffuse impact) and impact on future research (research impact).DesignA narrative review of MEDLINE, PsycINFO, Web of Science and Google Scholar was conducted from October 2016 to January 2022. The included studies involved at least one CYP in developing a research agenda and were published in English.Results22 studies were included; the CYP involved were aged between 6 years and 25 years. Little variation was found in the methods used to involve them. The methods used were James Lind Alliance (JLA) approach (n=16), focus groups (n=2), workshop (n=2), research prioritisation by affected communities (n=1) and combined methods (n=1). Impact was rarely described: focused impact in nine studies, diffuse impact in zero studies and research impact in three studies.ConclusionThis study concludes that the JLA approach is most frequently used to involve CYP and that all methods used to involve them are rarely evaluated. It also concludes that the reported impact of involving CYPs is incomplete. This study implies that to convince sceptical researchers of the benefits of involving CYPs and to justify the costs, more attention should be paid to reporting these impacts.
机构:
Ludwig Boltzmann Gesellschaft (LBG), Open Innovation in Science Center, Nussdorfer Strasse 64/2, ViennaLudwig Boltzmann Gesellschaft (LBG), Open Innovation in Science Center, Nussdorfer Strasse 64/2, Vienna
机构:
Starlight Childrens Fdn, Naremburn, NSW, Australia
Univ New South Wales, Sydney, NSW, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Treadgold, Claire
Frank, Belinda
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机构:
Telethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Frank, Belinda
Bates, Amber
论文数: 0引用数: 0
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机构:
Telethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Tiny Sparks WA, West Leederville, WA, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Bates, Amber
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机构:
Freeman, Jacinta
Lucas, Jayden
论文数: 0引用数: 0
h-index: 0
机构:
Telethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Lucas, Jayden
Dart, Julie
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h-index: 0
机构:
Telethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Perth Childrens Hosp, Nedlands, WA, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Dart, Julie
Davis, Elizabeth
论文数: 0引用数: 0
h-index: 0
机构:
Telethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Univ Western Australia, Med Sch, Perth, WA, Australia
Perth Childrens Hosp, Nedlands, WA, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
Davis, Elizabeth
Lingam, Raghu
论文数: 0引用数: 0
h-index: 0
机构:
Univ New South Wales, Sydney, NSW, AustraliaTelethon Kids Inst, Early Neurodev & Mental Hlth, Nedlands, WA, Australia
机构:
North York Gen Hosp, Dept Pediat, Toronto, ON, Canada
Univ Toronto, Dept Pediat, Toronto, ON, CanadaNorth York Gen Hosp, Dept Pediat, Toronto, ON, Canada
Lavigne, Mikael
Birken, Catherine S.
论文数: 0引用数: 0
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机构:
Univ Toronto, Dept Pediat, Toronto, ON, Canada
Hosp Sick Children, Dept Pediat, Toronto, ON, CanadaNorth York Gen Hosp, Dept Pediat, Toronto, ON, Canada
Birken, Catherine S.
Maguire, Jonathon L.
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机构:
St Michaels Hosp, Li Ka Shing Knowledge Inst, Toronto, ON, Canada
St Michaels Hosp, Dept Pediat, Toronto, ON, CanadaNorth York Gen Hosp, Dept Pediat, Toronto, ON, Canada
Maguire, Jonathon L.
Straus, Sharon
论文数: 0引用数: 0
h-index: 0
机构:
St Michaels Hosp, Li Ka Shing Knowledge Inst, Toronto, ON, Canada
Univ Toronto, Dept Med, Toronto, ON, CanadaNorth York Gen Hosp, Dept Pediat, Toronto, ON, Canada
Straus, Sharon
Laupacis, Andreas
论文数: 0引用数: 0
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机构:
St Michaels Hosp, Li Ka Shing Knowledge Inst, Toronto, ON, Canada
Univ Toronto, Dept Med, Toronto, ON, CanadaNorth York Gen Hosp, Dept Pediat, Toronto, ON, Canada