ArticleBMC medical ethics2015
"It scares me to know that we might not have been there!": a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions.
Article in BMC medical ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 28 citations in OpenAlex.
- Flebogamma(®) 5 % DIF Intravenous Immunoglobulin for Replacement Therapy in Children with Primary Immunodeficiency Diseases.Journal of clinical immunology · 2016Trial
- Patient Participation in Clinical Ethics Interventions: A Requirement of Procedural and Epistemic Justice.Bioethics · 2026Article
- Ethics support personnel's perceptions of patient and parent participation in clinical ethics support services in pediatric oncology.BMC medical ethics · 2025Article
- Establishing Clinical Ethics Committees in Primary Care: A Study from Norwegian Municipal Care.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2023Article
- Clinical ethics committees in nursing homes: what good can they do? Analysis of a single case consultation.Nursing ethics · 2022Article
- Evaluating assessment tools of the quality of clinical ethics consultations: a systematic scoping review from 1992 to 2019.BMC medical ethics · 2020Article
- Hospital ethics reflection groups: a learning and development resource for clinical practice.BMC medical ethics · 2019Article
- The significance of ethics reflection groups in mental health care: a focus group study among health care professionals.BMC medical ethics · 2018Article
- The Norwegian national project for ethics support in community health and care services.BMC medical ethics · 2016Article
- Discussing End-of-Life Decisions in a Clinical Ethics Committee: An Interview Study of Norwegian Doctors' Experience.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2016Article
Corrections and comments
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Authors and funding
2 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAll hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.
methodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.
resultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child's impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead. All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.
conclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC's role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion.
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