Annual report 2021

NOPHO/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

• 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

1. 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)
2. Bartholdson C, af Sandeberg M, Molewijk B, Pergert P (2021) Does participation in ethics discussions have in impact on ethics decision making? A cross-sectional study among healthcare professionals in paediatric oncology. EJON. (52):101950
3. 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
4. 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:

1. 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