ArticleHealth expectations : an international journal of public participation in health care and health policy2016
Making decisions about chronic disease treatment: a comparison of parents and their adolescent children.
Article in Health expectations : an international journal of public participation in health care and health policy, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis 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
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 47 citations in OpenAlex.
- Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis.The Cochrane database of systematic reviews · 2019Pooled it
- Health Care Provider Perspectives on Shared Decision Making With Parents and Adolescents.Clinical pediatrics · 2025Article
- Discrepancies in perceptions of well-being: comparing parental and pediatric PROMIS-patient-reported outcomes in Crohn's disease.Journal of patient-reported outcomes · 2025Article
- Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.Palliative & supportive care · 2024Article
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
- "I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.Pediatric rheumatology online journal · 2023Article
- Genomic Health Literacy Interventions in Pediatrics: Scoping Review.Journal of medical Internet research · 2021Article
- A qualitative study to explore symptoms and impacts of pediatric and adolescent Crohn's disease from patient and caregiver perspective.Journal of patient-reported outcomes · 2021Article
- Making Decisions About Stopping Medicines for Well-Controlled Juvenile Idiopathic Arthritis: A Mixed-Methods Study of Patients and Caregivers.Arthritis care & research · 2021Article
- Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.Journal of adolescent and young adult oncology · 2020Article
- Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model.Crohn's & colitis 360 · 2020Article
- Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Shared decision making in IBD: A novel approach to trial consent and timing.Contemporary clinical trials communications · 2019Article
- The Role of Shared Decision-Making in Shaping Intent to Access Services for Adolescents in Protective Custody.Child care in practice : Northern Ireland journal of multi-disciplinary child care practice · 2019Article
- Article
- Parents' information needs and influential factors when making decisions about TNF-α inhibitors.Pediatric rheumatology online journal · 2016Article
- Physicians' Perceptions of Shared Decision Making in Chronic Disease and Its Barriers and Facilitators.The Journal of pediatrics · 2016Article
- Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents' Decision-Making Process.Medical decision making : an international journal of the Society for Medical Decision Making · 2015Article
- Decision coaching using the Ottawa family decision guide with parents and their children: a field testing study.BMC medical informatics and decision making · 2015Article
- Validation of a Process for Shared Decision-Making in Pediatrics.Academic pediatricsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo compare factors considered by parents to those considered by adolescents making decisions about chronic disease treatments.
methodsWe conducted individual interviews with 15 parent-adolescent dyads in which the adolescent had either juvenile idiopathic arthritis or Crohn's disease. Questions focused on treatment decisions, with an emphasis on the factors that influenced each individual's preferences related to biologic therapies. A multidisciplinary team developed a coding structure. All interviews were coded by two people with disagreements resolved through discussion. We used content analysis and coding matrices to examine decision factors within and between parent-adolescent dyads.
resultsParents and adolescents both participated in decisions about treatment with biologic therapies but considered decision factors differently. In only half of cases did parents and adolescents agree on the factor that most influenced their decision. Although their decision factors often fell into similar categories (e.g. treatment risks, quality of life), in many cases the specifics varied between adolescents and their parents. Adolescents were more likely to focus on immediate treatment effects and quality of life while parents took a longer term view of the decision. Agreement within dyads was most consistent when a special circumstance influenced the treatment decision.
conclusionsDifferences regarding influential decision factors exist within parent-adolescent dyads. Continued research is needed to determine the extent to which such differences are due to individual preferences or to variations in the information available to each person. Future decision support interventions will need to address parents' and adolescents' potentially disparate views and information needs.
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Registered trials
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.