ArticleNursing ethics
The moral experiences of children with osteogenesis imperfecta.
Article in Nursing ethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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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.
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
4 citing papers in PubMed, 11 citations in OpenAlex.
- Resilience and coping: a qualitative analysis of cognitive and behavioral factors in adults with osteogenesis Imperfecta.Disability and rehabilitation · 2025Article
- Young people's and adults' views and experiences of decision-making to manage compromised first permanent molars: a qualitative study.International journal of paediatric dentistry · 2025Article
- Oral Health-Related Quality of Life in Italian Children and Adolescents Living with Bone Dysplasia: A Cross-Sectional Study.International journal of environmental research and public health · 2024Article
- The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study.JMIR research protocols · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSerious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their RESEARCH
aimsTo explore children's actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression. RESEARCH
designA focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and practice-based research (art-making) with 10 children with OI; and local documents. PARTICIPANTS AND RESEARCH CONTEXT: The study was conducted at a pediatric, orthopedic hospital. ETHICAL CONSIDERATIONS: This study was approved by McGill University Institutional Review Board. FINDINGS/
resultsChildren expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children's voice and participation in health-related discussions.
conclusionsHealthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children's actual and desired participation in care and promote positive moral experiences.
Indexed as
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What OpenQuestion holds
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.