Evidence map›Paper›PMID 29637137›Full record

ArticleBMJ paediatrics open2017

Perspectives of adolescents on decision making about participation in a biobank study: a pilot study.

Petronella Grootens-Wiegers, Eline G Visser, Annemarie M C van Rossum, Claudia N van Waardhuizen, Saskia N de Wildt, Boudewijn Sweep, Jos M van den Broek, Martine C de Vries

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In one paragraph

Article in BMJ paediatrics open, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed.

  1. Observational
  2. Creating a communication space in the healthcare context: Children's perspective of using the eHealth service, Sisom.Journal of child health care : for professionals working with children in the hospital and community · 2021
    Article
  3. Review
  4. Article
  5. Article
  6. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Petronella Grootens-WiegersDepartment of Science Communication and Society, Leiden University, Leiden, The Netherlands.
Eline G VisserDepartment of Pediatrics, Division of Infectious Diseases and Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Annemarie M C van RossumDepartment of Pediatrics, Division of Infectious Diseases and Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Claudia N van WaardhuizenTheme Sophia, Sector Research Office-Theme Sophia Biobank, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Saskia N de WildtIntensive Care and Department of Pediatric Surgery, Erasmus MC University Medical Center, Leiden, The Netherlands.
Boudewijn SweepDepartment of Science Communication and Society, Leiden University, Leiden, The Netherlands.
Jos M van den BroekDepartment of Science Communication and Society, Leiden University, Leiden, The Netherlands.
Martine C de VriesDepartments of Pediatrics and Ethics and Health Law, Leiden University Medical Center, Nijmegen, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesTo be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool.

methodsThe perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing.

resultsAll adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material.

conclusionsAdolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents' perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices. IMPLICATIONS: Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.

Indexed as

ethicspatient perspectivequalitative research

Identifiers

PMID29637137
PMCPMC5862224

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.