In 2022 the group were able to have physical meetings again. During the meetings topics to continue to work with arouse, for example: A Nordic study on moral distress and the ethical climate; Guidelines on ethical collaboration/teamwork; Ethics programme at the NOPHO/NOBOS meeting in Lund 2023; Patients on social media and Palliative sedation.
Members have been working on the homepage and have continued to update and maintain it to spread information about ethics and be a resource for healthcare professionals on where to find information and who to contact. The group has also participated in policymaking and CESS through serving as members of national, regional or local committees/societies/working groups.
Furthermore, members have been working in a national group in Sweden to develop an improved evaluation questionnaire focusing on outcomes of CESS. The developed version “Ethically difficult situations in care” is inspired by the Euro-MCD questionnaire (de Snoo-Trimp JC, 2020), established in the European Clinical Ethics Network (ECEN). Members of ECEN are collaborators. The development of the questionnaire and the content are currently in manuscript. When published it will be disseminated to all facilitators and used to evaluate CESS.
Members have also initiated a research project with the aim to explore patients, parents and healthcare professionals’ views on patient/parent participation in CESS. Separate funding has been granted for the research. WGE have been involved in planning and conducting workshops about patient and parent participation in CESS. CESS methods identified during the workshops will be piloted, tested and further developed. The WGE will then function as a reference group.
Completed meetings of the WGE, 2022
13-15 Mar 2022, Sweden
9-12 Oct 2022, Norway
Upcoming meetings of the WGE, 2023
The group plans to have one 3-day meeting in Sweden the 26-28 of March and one 4-day meeting 12-15 of November 2023 (Country to be decided).
Completed course arranged by the WGE
Since the group started to give the course in “Guiding Ethics Case Reflection Rounds” we have had 2 cohorts of the course. Approximately 50 persons have attended the coursewith an equal spread among physicians and nurses. Part II of the second cohort were held in April 2022. Additional to the course the group arranged an extra day with lectures and workshops regarding patients and parents’ participation in clinical ethics support.
Upcoming course arranged by the WGE
27-29 September 2023, Guiding Ethics Case Reflection Rounds, Cohort III, part I.
13-15 March 2024, Guiding Ethics Case Reflection Rounds, Cohort III, part II.
Funding
Wesenberg Rognlien received funding from the Norwegian Childhood Cancer Foundation for the meeting held in Oslo in September, 2022. Bartholdson (co-applicant: Pergert) has received a grant for the WGE for 2023-2025 (PL2022-0004) from the Swedish Childhood Cancer Foundation.
Presentations on ethics at international conferences from the group or with group members as co-authors during 2022
Weiner, C., Pergert, P. & Bartholdson, C. Parents perspectives on important values and ethically difficult situations when their child is treated for cancer: A qualitative interview study. (SIOP Meeting Abstract) Pediatric Blood & Cancer, 2022;69(Suppl. 5), p.S53.https://doi.org/10.1002/pbc.29952
Ventovaara, P., af Sandeberg, M., Petersen, G., Blomgren, K. & Pergert, P. Nurses’ perceptions of situations in paediatric oncology care that involve children’s voices – A cross-sectional survey of ethical climate and moral distress. (SIOP Meeting Abstract) Pediatric Blood & Cancer, 2022;69(Suppl. 5), p.S47. https://doi.org/10.1002/pbc.29952
Pergert, P., Bartholdson, C. & af Sandeberg. Context-specific situations important to capture moral distress – A national cross-sectional study in paediatric oncology. (Proceedings of ICCEC 2021) Journal of Hospital Ethics, 2022;8(1), p. 34–35
Publications on ethics from the group or with group members as co-authors, Original articles 2022
Bartholdson, C., Billstein, I., Molewijk B. & Pergert P. What outcomes of moral case deliberations are perceived important for healthcare professionals to handle moral challenges? A national cross-sectional study in paediatric oncology. BMC Medical Ethics. 2022; 23:108 DOI: 10.1186/s12910-022-00851-3
Weiner, C., Pergert, P., Castor, A., Molewijk, B. & Bartholdson, C. Difficult situations and moral questions raised during moral case deliberations in Swedish childhood cancer care – A qualitative nationwide study. European Journal of Oncology Nursing. 2022; 60:102189. DOI: 10.1016/j.ejon.2022.102189.
Ventovaara, P., af Sandeberg, M., Petersen, G., Blomgren, K. & Pergert, P. A cross-sectional survey of moral distress and ethical climate – Situations in paediatric oncology care that involve children’s voices. Nursing Open. 2022 Jul;9(4):2108-2116. DOI: 10.1002/nop2.1221; PMID: 35441803
Bartholdson C, Kreicbergs U, Sveen J, Lövgren M, Pohlkamp L. Communication about diagnosis and prognosis-A population-based survey among bereaved parents in pediatric oncology. Psychooncology. 2022 Dec;31(12):2149-2158. doi: 10.1002/pon.6058. Epub 2022 Nov 4. PMID: 36307935.
References
de Snoo-Trimp JC, de Vet HCW, Widdershoven GAM, Molewijk AC, Svantesson M. Moral competence, moral teamwork and moral action – the European Moral Case Deliberation Outcomes (Euro-MCD) Instrument 2.0 and its revision process. BMC Med Ethics. 2020 Jul 2;21(1):53. doi: 10.1186/s12910-020-00493-3. PMID: 32616048; PMCID: PMC7331166.
The intention of the NOPHO/NOBOS Working Group on Ethics (WGE) is to support the knowledge in ethics and promote clinical ethics support (CES) in paediatric oncology as well as identifying and raising ethical questions within the field.
The working group is the first joint working group with members from both NOPHO and NOBOS. All members are expected to be active. The newest NOPHO-member, Lithuania, is not yet represented in the group but hopefully this will change during the next year.
Completed meetings of the WGE
14-15 Mar 2022, Sweden
Upcoming meetings of the WGE
The group plans to have one 4-day meeting in the fall 2022 and one 3-day meeting in the spring 2023.
9-12 Oct, 2022, Norway
26-28 Mar 2023, Sweden
Completed course arranged by the WGE
Due to restrictions in both travel and meeting the second part of the course “Guiding Ethics Case Reflection Rounds” had to be postponed. To support the participants the group has instead organized other activities, such as a virtual ethics reflection to inspire, support and present tools for facilitating ethics case reflection rounds in a virtual setting.
Upcoming course arranged by the WGE
27-29 Apr 2022, Guiding Ethics Case Reflection Rounds, adjusted part II.
Due to the repeated postponement of the second part of the course and the long time that has passed since part I, the course has been adjusted to include more repetition and also to accommodate participants taking the course for the first time.
Funding
Pergert (co-applicant: Castor) has received a grant for the WGE for 2018-2020 (PL2017-0002) from the Swedish Childhood Cancer Foundation. Since most activities budgeted for in 2020 and 2021 have been postponed, an application to extend the grant to include 2021 has been approved and an application to also include 2022 has been sent.
ANNUAL REPORT 2021
The work in the group has continued to suffer from the restrictions due to the pandemic. Many or most hospitals have had strict rules on meeting time and the group has not been able to effectively meet in larger scale, even virtually. The members, however, inspired and enabled by their participation in the WGE, has continued to work in ethics locally to the extent this has been possible and approved.
The local CES projects performed by members includes: organizing and facilitating ECR rounds on several levels in the healthcare structure; arranging and contributing to ethical education of healthcare professionals and students; serving as members on national, regional and local ethics committees or societies; preforming and contributing to research projects. Members of the group has also been available to provide support for the facilitator trained in the courses of 2017-2018 and 2019.
At the International Conference on Clinical Ethics and Consultation (ICCEC) hosted in South Africa, members of the group had no less than three oral presentations that were delivered via video
.
Presentations on ethics at international conferences from the group or with group members as co-authors during 2021
ICCEC 2021, hybrid/Stellenbosch, South Africa, Nov 30-Dec 3, 2021
Pergert, P., Bartholdson, C., af Sandeberg,M., ”Context-specific Situations Important to Capture Moral Distress – A National Cross-Sectional Study in Paediatric Oncology.
Törnudd, L., & Bartholdson, C. “Patients on Social Media – Supportive Guidelines For an Ethical And Legal Approach”
Bartholdson, C., af Sandeberg, M., Molewijk, B., Pergert, P., ”Perceptions of Ethical Decision Making in Relation to Participation/Non participation in Ethics Case Reflection Rounds Among Healthcare Professional Caring for Children with Cancer”
Publications on ethics from the group or with group members as co-authors, Original articles 2021
Weiner C, Pergert P, Molewijk B, Castor A, Bartholdson C (2021) Perceptions of important outcomes of ethics case reflection rounds: a qualitative study among healthcare professionals in childhood cancer care. BMC Medical Ethics.22:(27)
Bartholdson C, Billstein I, Pergert P, Molewijk B (nd) Healthcare professionals ‘perceptions of ethics case reflection rounds before implementation – A national quantitative study in paediatric oncology. Submitted
Weiner C, Pergert P, Castor A, Molewijk B, Bartholdson C (nd). Difficult situations and moral questions raised during moral case deliberations in Swedish childhood cancer care – a qualitative nationwide overview. Submitted
Popular science/abstract publications:
Perceptions of important outcomes of ethics case reflection rounds: a qualitative study among healthcare professionals in childhood cancer care.
Does participation in ethics discussions have in impact on ethics decision making? A cross-sectional study among healthcare professionals in paediatric oncology
Annual Report 2022
/0 Comments/in Annual reports /by NOPHO-NOBOSethics.orgIn 2022 the group were able to have physical meetings again. During the meetings topics to continue to work with arouse, for example: A Nordic study on moral distress and the ethical climate; Guidelines on ethical collaboration/teamwork; Ethics programme at the NOPHO/NOBOS meeting in Lund 2023; Patients on social media and Palliative sedation.
Members have been working on the homepage and have continued to update and maintain it to spread information about ethics and be a resource for healthcare professionals on where to find information and who to contact. The group has also participated in policymaking and CESS through serving as members of national, regional or local committees/societies/working groups.
Furthermore, members have been working in a national group in Sweden to develop an improved evaluation questionnaire focusing on outcomes of CESS. The developed version “Ethically difficult situations in care” is inspired by the Euro-MCD questionnaire (de Snoo-Trimp JC, 2020), established in the European Clinical Ethics Network (ECEN). Members of ECEN are collaborators. The development of the questionnaire and the content are currently in manuscript. When published it will be disseminated to all facilitators and used to evaluate CESS.
Members have also initiated a research project with the aim to explore patients, parents and healthcare professionals’ views on patient/parent participation in CESS. Separate funding has been granted for the research. WGE have been involved in planning and conducting workshops about patient and parent participation in CESS. CESS methods identified during the workshops will be piloted, tested and further developed. The WGE will then function as a reference group.
Completed meetings of the WGE, 2022
13-15 Mar 2022, Sweden
9-12 Oct 2022, Norway
Upcoming meetings of the WGE, 2023
The group plans to have one 3-day meeting in Sweden the 26-28 of March and one 4-day meeting 12-15 of November 2023 (Country to be decided).
Completed course arranged by the WGE
Since the group started to give the course in “Guiding Ethics Case Reflection Rounds” we have had 2 cohorts of the course. Approximately 50 persons have attended the coursewith an equal spread among physicians and nurses. Part II of the second cohort were held in April 2022. Additional to the course the group arranged an extra day with lectures and workshops regarding patients and parents’ participation in clinical ethics support.
Upcoming course arranged by the WGE
27-29 September 2023, Guiding Ethics Case Reflection Rounds, Cohort III, part I.
13-15 March 2024, Guiding Ethics Case Reflection Rounds, Cohort III, part II.
Funding
Wesenberg Rognlien received funding from the Norwegian Childhood Cancer Foundation for the meeting held in Oslo in September, 2022. Bartholdson (co-applicant: Pergert) has received a grant for the WGE for 2023-2025 (PL2022-0004) from the Swedish Childhood Cancer Foundation.
Presentations on ethics at international conferences from the group or with group members as co-authors during 2022
Publications on ethics from the group or with group members as co-authors, Original articles 2022
References
de Snoo-Trimp JC, de Vet HCW, Widdershoven GAM, Molewijk AC, Svantesson M. Moral competence, moral teamwork and moral action – the European Moral Case Deliberation Outcomes (Euro-MCD) Instrument 2.0 and its revision process. BMC Med Ethics. 2020 Jul 2;21(1):53. doi: 10.1186/s12910-020-00493-3. PMID: 32616048; PMCID: PMC7331166.
Annual report 2021
/0 Comments/in Annual reports /by NOPHO-NOBOSethics.orgNOPHO/NOBOS Working Group on Ethics (WGE)
Members
Chair: Cecilia Bartholdson, elected 2022
Secretary: Gitte Petersen, elected 2022
Denmark: Astrid Sehested
Pernille Wendtland Edslev
Finland: Marika Grönroos
Kristian Juusola
Johanna Viitanen
Iceland: Sigrún Thoroddsdóttir
Norway: Grete Ringheim
Anne Gro Wesenberg Rognlien
Sweden: Johan Arvidson
Anders Castor
Frans Nilsson
Pernilla Pergert
Jennie Stigmar
Lisa Törnudd
The intention of the NOPHO/NOBOS Working Group on Ethics (WGE) is to support the knowledge in ethics and promote clinical ethics support (CES) in paediatric oncology as well as identifying and raising ethical questions within the field.
The working group is the first joint working group with members from both NOPHO and NOBOS. All members are expected to be active. The newest NOPHO-member, Lithuania, is not yet represented in the group but hopefully this will change during the next year.
Completed meetings of the WGE
14-15 Mar 2022, Sweden
Upcoming meetings of the WGE
The group plans to have one 4-day meeting in the fall 2022 and one 3-day meeting in the spring 2023.
9-12 Oct, 2022, Norway
26-28 Mar 2023, Sweden
Completed course arranged by the WGE
Due to restrictions in both travel and meeting the second part of the course “Guiding Ethics Case Reflection Rounds” had to be postponed. To support the participants the group has instead organized other activities, such as a virtual ethics reflection to inspire, support and present tools for facilitating ethics case reflection rounds in a virtual setting.
Upcoming course arranged by the WGE
27-29 Apr 2022, Guiding Ethics Case Reflection Rounds, adjusted part II.
Due to the repeated postponement of the second part of the course and the long time that has passed since part I, the course has been adjusted to include more repetition and also to accommodate participants taking the course for the first time.
Funding
Pergert (co-applicant: Castor) has received a grant for the WGE for 2018-2020 (PL2017-0002) from the Swedish Childhood Cancer Foundation. Since most activities budgeted for in 2020 and 2021 have been postponed, an application to extend the grant to include 2021 has been approved and an application to also include 2022 has been sent.
ANNUAL REPORT 2021
The work in the group has continued to suffer from the restrictions due to the pandemic. Many or most hospitals have had strict rules on meeting time and the group has not been able to effectively meet in larger scale, even virtually. The members, however, inspired and enabled by their participation in the WGE, has continued to work in ethics locally to the extent this has been possible and approved.
The local CES projects performed by members includes: organizing and facilitating ECR rounds on several levels in the healthcare structure; arranging and contributing to ethical education of healthcare professionals and students; serving as members on national, regional and local ethics committees or societies; preforming and contributing to research projects. Members of the group has also been available to provide support for the facilitator trained in the courses of 2017-2018 and 2019.
At the International Conference on Clinical Ethics and Consultation (ICCEC) hosted in South Africa, members of the group had no less than three oral presentations that were delivered via video
.
Presentations on ethics at international conferences from the group or with group members as co-authors during 2021
Publications on ethics from the group or with group members as co-authors, Original articles 2021
Popular science/abstract publications: