Observational research with adolescents: a framework for the management of the parental permission

Ruiz‐Canela, Miguel; Burgo, Cristina López-del; Carlos, Silvia; Calatrava, María; Beltramo, Carlos; Osorio, Alfonso; Irala, Jokin de

doi:10.1186/1472-6939-14-2

Cited by 30 publications

(33 citation statements)

References 41 publications

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“…For consent amongst adolescents, we followed the World Health Organization's guidance that [20], 'where adolescents are or are about to be sexually active, investigators commit no legal offence in undertaking research that promises a favorable benefit-risk ratio', and 'If adolescents are mature enough to understand the purpose of the proposed study and the involvement requested, then they are mature enough to consent.' Further, Bruzzese & Fisher [39] argue that unlike younger adolescents, those over 16 can make informed decisions as well as adults; others concur [40] that adolescents above 16 should be allowed to decide for themselves where the risk of harm or discomfort from the research is minimal, and the questions are unlikely to be offensive to most adolescents (this was the case in this study).…”

Section: Ethics and Consentmentioning

confidence: 68%

‘You have a child who will call you “mama” ’: understanding adolescent pregnancy in South Sudan

Kane

Miedema

Dieleman

et al. 2019

Global Health Action

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Background: Pregnancy amongst adolescent girls is common in many parts of the world. The dominant discourse in public health unquestioningly paints this as a problem; it does not pay sufficient attention to girls’ views. Objectives: This paper presents a critical account of adolescent South Sudanese girls’ reasons for and explanations of childbearing. It discusses their experiences and views on childbearing and attempts to explain their reproductive choices and actions, in context. Methods: The study draws upon 24 interviews with adolescent boys, girls and parents from Wau, South Sudan. Data was analysed using the framework analysis approach. Results: Three interacting themes within which adolescent girls framed their views and decisions about childbearing are identified. The local society places high value on motherhood – adolescent girls’ desires to become mothers is a reproduction of this social norm. Girls linked having a child to the possibility of making one’s ‘own home’; in the difficult and uncertain context they lived in, for many girls, having a child (and making a home) appeared as one of the few means to be happy. In making the decision to bear a child, the girls navigated multiple dilemmas and trade-offs between an unpromising present and an uncertain future. Bearing a child and making one’s ‘own home’ was seen as a way to exit into the world of adults, and as a strategy towards achieving security and stability. Conclusions: Instead of simplistically problematizing adolescent pregnancy in South Sudan, it is important to take into account the experiences and standpoints of adolescent girls, and to recognize that in choosing to become mothers, they are in many ways exercising agency despite being severely constrained by complex, insecure and unfair social circumstances. We argue that such an approach will allow the development of more appropriate, realistic and inclusive health and social policies and programs.

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Section: Ethics and Consentmentioning

confidence: 68%

‘You have a child who will call you “mama” ’: understanding adolescent pregnancy in South Sudan

Kane

Miedema

Dieleman

et al. 2019

Global Health Action

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“…Furthermore, it was surveyed the position of parents and responsible people within the context of research with adolescents. Thus, it was listed subjects such as informed consent, autonomy of adolescents to participate in scientific studies and vulnerability [13][14][15][16] .…”

Section: Resultsmentioning

confidence: 99%

“…With that in mind, Ruiz-Canela and collaborators 16 defend that waiving an active authorization of parents could be acceptable when the risk of damage is minimum; the investigation matters are related to activities to which adolescents are not legally considered children; the risk of damage or discomfort can increase if it parents' authorization is required; and when the discomfort risk is low because the questionnaire is not potentially offensive to some adolescents and/ or parents. Thus, it can be the moment to suggest a new point of view about such important matter and develop guidelines under which the parents' consent can be waived.…”

Section: Vulnerability Of Adolescents In Clinical Research and Practicementioning

confidence: 99%

Vulnerabilidade de adolescentes em pesquisa e prática clínica

Santos

Gomes²,

Teixeira³

et al. 2017

Rev. Bioét.

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Adolescents are considered vulnerable and exposed to different threats to health group, making it necessary discussion about ethical aspects related to their participation in research and clinical practice. The employed methodology was an integrative literature review and it was selected studies that approached the subject "bioethical matters related to vulnerability of adolescents" within the last fifteen years. Nine articles included the pre-established criteria to the study, grouped into three categories: 1) works that mentioned the psychological-cognitive comprehension of adolescent to participate in scientific research; 2) works emphasizing aspects related to medical decisions; and 3) studies approaching the issue of sexuality in adolescence. The analysis of selected studies found out it is not possible to reach a valid consensus to all situations involving adolescents in research and clinical practice. Resumo Vulnerabilidade de adolescentes em pesquisa e prática clínicaOs adolescentes são considerados grupo vulnerável e exposto a diferentes ameaças à saúde, tornando-se necessária a discussão sobre aspectos éticos relacionados a sua participação em pesquisa e prática clínica. Por meio de revisão integrativa de literatura foram selecionados estudos que abordaram aspectos bioéticos relacionados à vulnerabilidade de adolescentes nos últimos quinze anos. Nove artigos atenderam aos critérios pré-estabelecidos para o estudo e foram agrupados em três categorias: 1) trabalhos que pontuaram a compreensão psicológica e cognitiva do adolescente ao participar de pesquisa científica; 2) estudos que enfatizaram aspectos relacionados a decisões médicas; e 3) estudos que abordaram a temática da sexualidade na adolescência. Após análise dos estudos selecionados, verificou-se que não é possível chegar a consenso válido para todas as situações que envolvem adolescentes em pesquisa e prática clínica. Palavras-chave: Vulnerabilidade. Adolescência. Bioética. Resumen La vulnerabilidad de los adolescentes en la investigación y en la práctica clínicaLos adolescentes son considerados como grupo vulnerable y expuesto a diferentes amenazas en el ámbito de la salud, por lo cual es necesario que exista un debate sobre los aspectos éticos relacionados con su participación en la investigación y en la práctica clínica. Por medio de una revisión integradora de la literatura, se seleccionaron estudios que abordaban aspectos bioéticos relacionados con la vulnerabilidad de los adolescentes en los últimos quince años. Nueve artículos contemplaban los criterios preestablecidos para el estudio y se agruparon en tres categorías: 1) trabajos que contemplaban la comprensión psicológica y cognitiva del adolescente al participar en la investigación científica; 2) estudios que enfatizaban los aspectos relacionados con las decisiones médicas; y 3) estudios que abordaban la sexualidad en la adolescencia. Después del análisis de los estudios seleccionados, se verificó que no es posible llegar a un consenso válido para todas las situaciones que involucran a...

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“…8, 9 However, in many instances, it makes sense to find a way for adolescents to have a sense of agency over their own decision, while benefiting from parental guidance as needed. This balancing process between adolescent autonomy and parental guidance will change as adolescents mature and gain experience.…”

Section: Introductionmentioning

confidence: 99%

Parents’ and Adolescents’ Attitudes about Parental Involvement in Clinical Research

Rosenthal

Roche

Catallozzi

et al. 2016

Journal of Pediatric and Adolescent Gynecology

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Study objective To understand parent/adolescent attitudes towards parental involvement (PI) during clinical trials and factors related to those attitudes. Design As part of a study on willingness to participate in a hypothetical microbicide study, adolescents and their parents were interviewed separately. Setting Adolescent medicine clinics in New York City Participants There were 301 dyads of adolescents (ages 14 to 17 years; 62% female; 72% Hispanic) and their parents. Interventions None Main outcome measures The interview included demographics, sexual history, family environment (subscales of the Family Environment Scale (FES)), which was associated with attitudes about parental involvement. Results Factor analysis of the parental involvement scale yielded two factors: LEARN, reflecting gaining knowledge about study test results/behaviors (4 items) and PROCEDURE, reflecting enrollment/permissions (4 items). Adolescents endorsed significantly fewer items on both the LEARN scale and the PROCEDURE scale indicating that adolescents believed in less parental involvement. There was no significant concordance between adolescents and their own parents on the LEARN scale and the PROCEDURE scale. In final multivariate models predicting attitudes, adolescents who were female and had sexual contact beyond kissing, and non-Hispanic parents had lower LEARN scores. Adolescents who were older, had previous research experience, and reported less moral-religious emphasis in their family had lower PROCEDURE scores; there were no significant predictors for parents in the multivariate analyses. Conclusions Parents wanted greater involvement in the research process than adolescents. Recruitment/retention may be enhanced by managing these differing expectations.

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Observational research with adolescents: a framework for the management of the parental permission

Cited by 30 publications

References 41 publications

‘You have a child who will call you “mama” ’: understanding adolescent pregnancy in South Sudan

‘You have a child who will call you “mama” ’: understanding adolescent pregnancy in South Sudan

Vulnerabilidade de adolescentes em pesquisa e prática clínica

Parents’ and Adolescents’ Attitudes about Parental Involvement in Clinical Research

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