FROM RESEARCH « ON » TO RESEARCH « WITH » CHILDREN ABOUT THEIR FAMILY LIVES: a scoping review of ethical and methodological challenges

2021 ◽  
Author(s):  
Anne‐Catherine Dubois ◽  
Magali Lahaye ◽  
Isabelle Aujoulat
Keyword(s):  
Scoping Review ◽  
Methodological Challenges ◽  
Research With Children

scholarly journals The Methodological Quality and Challenges in Conducting Economic Evaluations of Newborn Screening: A Scoping Review

2020 ◽  
Vol 6 (4) ◽  
pp. 94
Author(s):  
Pasquale Cacciatore ◽  
Laurenske A. Visser ◽  
Nasuh Buyukkaramikli ◽  
Catharina P. B. van der Ploeg ◽  
M. Elske van den Akker-van Marle
Keyword(s):  
Resource Allocation ◽  
Cost Effectiveness ◽  
Newborn Screening ◽  
Scoping Review ◽  
Methodological Quality ◽  
Economic Evaluations ◽  
Screening Programs ◽  
Methodological Challenges ◽  
Life Years

Cost-effectiveness (CEA) and cost–utility analyses (CUA) have become popular types of economic evaluations (EE) used for evidence-based decision-making in healthcare resource allocation. Newborn screening programs (NBS) can have significant clinical benefits for society, and cost-effectiveness analysis may help to select the optimal strategy among different screening programs, including the no-screening option, on different conditions. These economic analyses of NBS, however, are hindered by several methodological challenges. This study explored the methodological quality in recent NBS economic evaluations and analyzed the main challenges and strategies adopted by researchers to deal with them. A scoping review was conducted according to PRISMA methodology to identify CEAs and CUAs of NBS. The methodological quality of the retrieved studies was assessed quantitatively using a specific guideline for the quality assessment of NBS economic evaluations, by calculating a general score for each EE. Challenges in the studies were then explored using thematic analysis as a qualitative synthesis approach. Thirty-five studies met the inclusion criteria. The quantitative analysis showed that the methodological quality of NBS economic evaluations was heterogeneous. Lack of clear description of items related to results, discussion, and discounting were the most frequent flaws. Methodological challenges in performing EEs of neonatal screenings include the adoption of a long time horizon, the use of quality-adjusted life years as health outcome measure, and the assessment of costs beyond the screening interventions. The results of this review can support future economic evaluation research, aiding researchers to develop a methodological guidance to perform EEs aimed at producing solid results to inform decisions for resource allocation in neonatal screening.

Troubling the boundaries: Overcoming methodological challenges in a multi-sectoral and multi-jurisdictional HIV/HCV policy scoping review

2016 ◽  
Vol 12 (2) ◽  
pp. 217-233 ◽  
Author(s):  
Kathleen A Hare ◽  
Anik Dubé ◽  
Zack Marshall ◽  
Jacqueline Gahagan ◽  
Gregory E Harris ◽  
...  
Keyword(s):  
Scoping Review ◽  
Methodological Challenges

scholarly journals Is small beautiful? A scoping review of 21st-century research on small rural schools in Europe

2021 ◽  
pp. 147490412110222
Author(s):  
Montserrat Fargas-Malet ◽  
Carl Bagley
Keyword(s):  
School Leadership ◽  
Rural Schools ◽  
Scoping Review ◽  
Geographical Isolation ◽  
Theoretical Frameworks ◽  
School Closures ◽  
Current Review ◽  
Research With Children ◽  
Small Rural Schools ◽  
Policy Arena

Small rural schools in many countries have historically been viewed as less desirable than their larger urban counterparts, being treated less favourably in the policy arena and facing a risk of closure or amalgamation. Within Europe, they have been the focus of a range of research studies and have been defined in different ways, based mostly on the number of pupils enrolled (typically around 100), but also their geographical isolation or small number of staff. However, the last notable attempt to review the literature in this area was carried out over 10 years ago. Since then, there has been a large volume of research conducted in many European countries. This rigorous scoping review has brought together what we know from research (published in English since 2000) on small rural schools in Europe. The most common themes identified were school leadership, the importance of context (including education policy and school closures/amalgamations), and school-community relationships. Case studies and ethnographic qualitative methods were the most popular, with a stronger use made of theoretical frameworks since the previous review. Nonetheless, the current review found still significant gaps in the literature including an under-theorization of certain topics and a lack of research with children.

scholarly journals PROTAGONISMO INFANTIL, DESAFIOS ÉTICOS E METODOLÓGICOS NA PESQUISA COM CRIANÇAS

2017 ◽  
Vol 23 ◽  
pp. 237
Author(s):  
Kelly Werle ◽  
Cláudia Ribeiro Bellochio
Keyword(s):  
Methodological Challenge ◽  
Social Actors ◽  
Theoretical Support ◽  
Methodological Challenges ◽  
Research With Children ◽  
Palabras Clave ◽  
Child Education ◽  
Education School ◽  
Sociology Of Childhood ◽  
Historically Situated

Este artigo focaliza o protagonismo infantil, desafios éticos e metodológicos no desenvolvimento de pesquisa com a participação de crianças da Educação Infantil. Como aporte teórico tem-se os estudos da sociologia da infância (CORSARO, 2011; SARMENTO, 2003; QVORTRUP, 2011), compreendendo a criança como ator social, historicamente situado, que nas interações com seus pares e com o contexto social produz culturas. Destaca-se a necessidade do pesquisador estar, constantemente, buscando estratégias éticas e metodológicas que possibilitem compreender o modo como as crianças narram, significam e recriam suas experiências junto aos pares, proporcionando visibilidade às culturas da infância, produzidas pelas diferentes formas de protagonismos infantis.Palavras-chave: Pesquisa com crianças. Culturas da infância. Protagonismo infantil.CHILDREN AS PROTAGONISTS, ETHICAL AND METHODOLOGICAL CHALLENGE IN RESEARCHINGABbstract: This article focuses on children acting as protagonists and on the ethical and methodological challenges during the development of the research that had the participation of kids from a Child Education School. As theoretical support, it was chosen the studies concerning the Sociology of Childhood (CORSARO, 2011; SARMENTO, 2003; QVORTRUP, 2011), which understand children as social actors, historically situated, and who produce culture when interacting with their peers. It is highlighted that the researcher needs to be constantly searching for ethical and methodological strategies to better understand how kids narrate, give meaning and recreate the experiences with their peers giving visibility to the cultures of childhood produced by their different acts as protagonists.Keywords: Research with children. Cultures of childhood. Children as Protagonists.PROTAGONISMO INFANTIL, DESAFÍOS ÉTICOS Y METODOLÓGICOS EN LA INVESTIGACIÓN CON NIÑOSResumen: Este artículo enfoca el protagonismo infantil, desafíos éticos y metodológicos en el desarrollo de la investigación con la participación de niños de Educación Infantil. Se tienen como aporte teórico los estudios de sociología de la infancia (CORSARO, 2011; SARMENTO, 2003; OVORTRUP, 2011), comprendiendo al niño como actor social, históricamente situado, que produce culturas en la interacciones con sus pares y con el medio social. Se destaca la necesidad constante por parte del investigador de estar buscando estrategias éticas y metodológicas que posibiliten comprender la manera como los niños narran, significan, recrean sus experiencias junto con sus pares, proporcionando visibilidad a las culturas de la infancia, producidas por las diferentes formas de protagonismo infantil. Palabras clave: Investigación con niños. Culturas de la infancia. Protagonismo infantil.

scholarly journals Incorporating Cascade Effects of Genetic Testing in Economic Evaluation: A Scoping Review of Methodological Challenges

Children ◽  
2021 ◽  
Vol 8 (5) ◽  
pp. 346
Author(s):  
Alexandra Cernat ◽  
Robin Z. Hayeems ◽  
Lisa A. Prosser ◽  
Wendy J. Ungar
Keyword(s):  
Economic Evaluation ◽  
Genetic Testing ◽  
Scoping Review ◽  
English Language ◽  
System Level ◽  
Economic Evaluations ◽  
Economic Implications ◽  
Methodological Challenges ◽  
Genetic Technologies ◽  
Cascade Effects

Cascade genetic testing is indicated for family members of individuals testing positive on a genetic test, and is particularly relevant for child health because of their vulnerability and the long-term health and economic implications. Cascade testing has patient- and health system-level implications; however cascade costs and health effects are not routinely considered in economic evaluation. The methodological challenges associated with incorporating cascade effects in economic evaluation require examination. The purpose of this scoping review was to identify published economic evaluations that considered cascade genetic testing. Citation databases were searched for English-language economic evaluations reporting on cascade genetic testing. Nineteen publications were included. In four, genetic testing was used to identify new index patients—cascade effects were also considered; thirteen assessed cascade genetic testing strategies for the identification of at-risk relatives; and two calculated the costs of cascade genetic testing as a secondary objective. Methodological challenges associated with incorporating cascade effects in economic evaluation are related to study design, costing, measurement and valuation of health outcomes, and modeling. As health economic studies may currently be underestimating both the cost and health benefits attributable to genetic technologies through omission of cascade effects, development of methods to address these difficulties is required.

scholarly journals PROTAGONISMO INFANTIL, DESAFIOS ÉTICOS E METODOLÓGICOS NA PESQUISA COM CRIANÇAS

2017 ◽  
Vol 23 ◽  
pp. 227 ◽  
Author(s):  
Kelly Werle ◽  
Cláudia Ribeiro Bellochio
Keyword(s):  
Primary School ◽  
Methodological Challenge ◽  
Social Actors ◽  
Methodological Challenges ◽  
Research With Children ◽  
Sociology Of Childhood ◽  
Historically Situated

Este artigo focaliza o protagonismo infantil, desafios éticos e metodológicos no desenvolvimento de pesquisa com a participação de crianças da Educação Infantil. Como aporte teórico tem-se os estudos da sociologia da infância (CORSARO, 2011; SARMENTO, 2003; QVORTRUP, 2011), compreendendo a criança como ator social, historicamente situado, que nas interações com seus pares e com o contexto social produz culturas. Destaca-se a necessidade do pesquisador estar, constantemente, buscando estratégias éticas e metodológicas que possibilitem compreender o modo como as crianças narram, significam e recriam suas experiências junto aos pares,proporcionando visibilidade às culturas da infância, produzidas pelas diferentes formas de protagonismos infantis.Palavras-chave: Pesquisa com crianças. Culturas da infância. Protagonismo infantil.CHILDREN AS PROTAGONISTS, ETHICAL AND METHODOLOGICAL CHALLENGE IN RESEARCHINGAbstract: This article focuses on children acting as protagonists and on the ethical and methodological challenges during the development of the research that had the participation of kids from a primary school. As theoreticalsupport, studies concerning the Sociology of Childhood (CORSARO, 2011; SARMENTO, 2003; QVORTRUP, 2011) were chosen, which understand children as social actors, historically situated, and who produce culture when interacting with their peers. It is highlighted that the researcher needs to be constantly searching for ethical and methodological strategies to better understand how kids narrate, give meaning and recreate the experiences with their peers giving visibility to the cultures of childhood produced by their different acts as protagonists.Keywords: Research with children. Childhood cultures. Children as Protagonists.PROTAGONISMO INFANTIL, RETOS ÉTICOS Y METODOLÓGICOS EN LA INVESTIGACIÓN CON NIÑOSResumen: Este artículo enfoca el protagonismo infantil, retos éticos y metodológicos en el desarrollo de la investigación con la participación de niños de la Educación Infantil. Se tienen como aporte teórico los estudios desociología de la infancia (CORSARO, 2011; SARMENTO, 2003; OVORTRUP, 2011), comprendiendo al niño como actor social, históricamente situado, que produce culturas en la interacciones con sus pares y con el medio social.Se destaca la necesidad constante por parte del investigador de estar buscando estrategias éticas y metodológicas que posibiliten comprender la manera como los niños narran, significan y recrean sus experiencias junto con sus pares, proporcionando visibilidad a las culturas de la infancia, producidas por las diferentes formas de protagonismos infantiles.Palabras clave: Investigación con niños. Culturas de la infancia. Protagonismo infantil.

scholarly journals Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review

2018 ◽  
Vol 2 (1) ◽  
pp. e000298 ◽  
Author(s):  
Marcela Colom ◽  
Peter Rohloff
Keyword(s):  
Informed Consent ◽  
Scoping Review ◽  
Individual Autonomy ◽  
Paediatric Research ◽  
Low Literacy ◽  
Middle Income ◽  
Middle Income Countries ◽  
Research With Children ◽  
Low Middle Income Countries ◽  
Practical Guidance

IntroductionConducting research with children in low/middle-income countries (LMIC) requires consideration of socioeconomic inequalities and cultural and linguistic differences. Our objective was to survey the literature on informed consent in paediatric LMIC research, assessing for practical guidance for culturally and linguistically appropriate procedures.MethodsWe conducted a scoping review on informed consent in paediatric LMIC research searching the PubMed, Web of Science and PsycINFO databases. Eligible articles were published in English, from any date range, of any study design or format.ResultsThe search identified 2027 references, of which 50 were included in the analysis following full-text review. Reviewed guidelines emphasised individual, informed and voluntary consent from parents and caregivers. Reviewed articles provided detailed practical guidance on adapting these guiding principles to LMIC settings, including considerations for community engagement, verbal or other alternative consent procedures for low-literacy settings or less commonly spoken languages and guarding against therapeutic misconception by caregivers. There was uncertainty, however, on how to best protect individual autonomy, especially when influenced by gender dynamics, leadership hierarchies or the social status of researchers themselves. There was, furthermore, limited research discussing the special case of research involving adolescents or of procedures for documenting assent by participating children.ConclusionsA scoping review of paediatric research in LMICs revealed substantial guidance on several features of culturally appropriate informed consent. However, additional research and guidance is needed, especially in the areas of gender imbalances, research with adolescents and children’s own assent to participate in research.

Sign in / Sign up

Export Citation Format

Share Document