ArticleEuropean journal of pediatrics2016
Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology.
Article in European journal of pediatrics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 2 of them syntheses that pooled it.
What it found
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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.
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Who cites it
22 citing papers in PubMed, 2 syntheses or guidelines pooled it, 48 citations in OpenAlex.
- Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.Pediatric blood & cancer · 2022Pooled it
- Barriers and facilitators of pediatric shared decision-making: a systematic review.Implementation science : IS · 2019Pooled it
- Children's participation in assent to paediatric oncology research: experiences of children, siblings and parents.Trials · 2026Article
- Child and Adolescent Cancer Communication Preferences for Treatment Decision Making: A Meta-Synthesis.Pediatric blood & cancer · 2025Review
- Involving Adolescents in Decision-Making in Pediatric Organ Transplantation: A Qualitative Study in Switzerland.Pediatric transplantation · 2025Article
- Decision-making for children and adolescents: a scoping review of interventions increasing participation in decision-making.Pediatric research · 2025Article
- Children's cognition and attitudes during long-term cancer treatment: an ethnographic study.BMJ paediatrics open · 2024Article
- Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.Palliative & supportive care · 2024Article
- The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.Healthcare (Basel, Switzerland) · 2023Article
- Article
- Communication tools used in cancer communication with children: a scoping review protocol.BMJ open · 2022Article
- Changes of cancer diagnosis disclosure to children in Japan in the last 20 years.International journal of clinical oncology · 2022Article
- In the name of the family? Against parents' refusal to disclose prognostic information to children.Medicine, health care, and philosophy · 2021Article
- How do children and adolescents experience healthcare professionals? Scoping review and interpretive synthesis.BMJ open · 2021Article
- Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured.Acta paediatrica (Oslo, Norway : 1992) · 2019Article
- Parents' experiences of an e-health intervention implemented in pediatric healthcare: a qualitative study.BMC health services research · 2019Article
- Role of Patients and Parents in Pediatric Drug Development.Therapeutic innovation & regulatory science · 2019Article
- Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer.Oncology nursing forum · 2019Review
- ADOLESCENT PATIENTS AND THE CLINICAL DECISION ABOUT THEIR HEALTH.Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo · 2019Review
- Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2018Article
Corrections and comments
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Authors and funding
9 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
unlabelledAdequate participation of children and adolescents in their healthcare is a value underlined by several professional associations. However, little guidance exists as to how this principle can be successfully translated into practice. A total of 52 semi-structured interviews were carried out with 19 parents, 17 children, and 16 pediatric oncologists. Questions pertained to participants' experiences with patient participation in communication and decision-making. Applied thematic analysis was used to identify themes with regard to participation. Three main themes were identified: (a) modes of participation that captured the different ways in which children and adolescents were involved in their healthcare; (b) regulating participation, that is, regulatory mechanisms that allowed children, parents, and oncologists to adapt patient involvement in communication and decision-making; and (c) other factors that influenced patient participation. This last theme included aspects that had an overall impact on how children participated. Patient participation in pediatrics is a complex issue and physicians face considerable challenges in facilitating adequate involvement of children and adolescents in this setting. Nonetheless, they occupy a central role in creating room for choice and guiding parents in involving their child.
conclusionAdequate training of professionals to successfully translate the principle of patient participation into practice is required. WHAT IS KNOWN: •Adequate participation of pediatric patients in communication and decision-making is recommended by professional guidelines but little guidance exists as to how to translate it into practice. What is New: •The strategies used by physicians, parents, and patients to achieve participation are complex and serve to both enable and restrict children's and adolescents' involvement.
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