Understanding the Ethical Requirement for Parental Consent When Engaging Youth in Research

Kennan, Danielle

doi:10.1007/978-94-6300-052-9_5

Cited by 7 publications

(6 citation statements)

References 20 publications

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“…However, the approach chosen for this study presents several challenges. Ethically, like many other countries, Belgium requires parental consent prior to participation in medical or non-medical research [ 119 , 120 ]. This is known as the statutory approach to consent, in other words, the legal approach to consent.…”

Section: Discussionmentioning

confidence: 99%

Integrating perspectives of transgender and gender-diverse youth, family members, and professionals to support their health and wellbeing – a mixed-method study protocol

Servais,

Vanhoutte,

Aguirre-Sánchez-Beato

et al. 2024

Arch Public Health

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Background The current literature highlights a strong link between the poor health outcomes of transgender and gender diverse (TGD) individuals and their negative experiences in various areas of life. Most of these publications rely on adults’ memories, lacking a focus on the current experiences and needs of young transgender and gender-diverse individuals. Furthermore, previous studies on support for these young people often solely consider the perspectives of TGD adults or professionals and rarely involve parents’ viewpoints. Methods This study will use a mixed sequential method with a participatory approach. Firstly, the qualitative phase will explore the difficulties and needs of TGD (15–20 years old) and of the families and professionals who support them. Results from this part will be used to develop the questionnaire for the quantitative phase, with the help of a community board. Secondly, based on participatory epidemiological research, the quantitative phase will use an intersectional perspective to measure the impact of individual and structural factors on the quality of life and well-being of transgender and gender-diverse young people. Finally, a co-creation phase will be undertaken to formulate recommendations based on the results of the first two phases. Discussion This research aims at better understanding the influence of gender identity on the quality of life and health of TGD young people and their families and to identify protective and risk factors that affect their vulnerabilities. Ethics and dissemination This study has been approved by the Ethics Committee of the Erasme Faculty Hospital (CCB B4062023000140). As this research is participatory and part of a PhD dissertation, we aim to disseminate the results through our partners’ networks and structures locally, and internationally through conferences and peer-reviewed journals.

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Section: Discussionmentioning

confidence: 99%

Integrating perspectives of transgender and gender-diverse youth, family members, and professionals to support their health and wellbeing – a mixed-method study protocol

Servais,

Vanhoutte,

Aguirre-Sánchez-Beato

et al. 2024

Arch Public Health

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“…Inconsistent approaches and ambiguities in defining an adolescent, a mature minor and minimal risk research have led to extensive debate on the ethics and value of parental consent [ 116 – 118 ]. As recognised in this review, parental consent regulations differ by location, participant age, and research design and context, and are subject to case-by-case interpretation by ethics committees [ 119 , 120 ]. Academic researchers used a variety of methods to record parental consent.…”

Section: Discussionmentioning

confidence: 99%

Ethical issues in using the internet to engage participants in family and child research: A scoping review

et al. 2018

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BackgroundThe internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.MethodsAcademic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.ResultsSixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children’s vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.ConclusionsEngaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

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“…Parents play an important role in assessing information about research studies and supporting an adolescent's decision about participation. They can also offer guidance and a reassuring presence during the research 87 . It is important to note, however, that relationships with parents may be strained or absent for young people with past trauma or ACEs, 88 and there is evidence that requiring active parental consent may limit the participation of adolescents with self‐reported adverse outcomes 89 .…”

Section: Ethical Considerations In Arts‐health Research With Adolescents With Acesmentioning

confidence: 99%

Ethical issues in participatory arts methods for young people with adverse childhood experiences

Pavarini

Smith

Shaughnessy

et al. 2021

Health Expectations

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Context Participatory arts‐based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective Using the current literature on arts‐based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in‐practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages.

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Understanding the Ethical Requirement for Parental Consent When Engaging Youth in Research

Cited by 7 publications

References 20 publications

Integrating perspectives of transgender and gender-diverse youth, family members, and professionals to support their health and wellbeing – a mixed-method study protocol

Integrating perspectives of transgender and gender-diverse youth, family members, and professionals to support their health and wellbeing – a mixed-method study protocol

Ethical issues in using the internet to engage participants in family and child research: A scoping review

Ethical issues in participatory arts methods for young people with adverse childhood experiences

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