Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Preparing Families for Parental Death: Translation and Cultural Adaptation of ‘Family-Centred Cancer Care Conversations: The Talking, Telling and Sharing Framework: End of Life’ into the Danish Context (126206)

Anne Katrine Hartmann Søby 1 , Jeffrey R. Hanna 2 3 , Cherith Semple 2 3 , Emma Bang Andersen 4 , Hanna Sejthen Sorknæs 1 , Sidsel Brunn Steinmüller 1 , Rikke Amalie Agergaard Jensen 5 6
  1. Department of Oncology, University Hospital Lillebaelt, Vejle, Denmark
  2. Institute of Nursing and Health Research, Ulster University, Belfast, United Kingdom
  3. South Eastern Health and Social Care Trust, Ulster Hospital, Dundonald, United Kingdom
  4. Community Mental Health Centre, Region of Southern Denmark, Odense, Denmark
  5. Centre for Involvement of Relatives, Region of Southern Denmark, Vejle, Denmark
  6. Department of Regional Health Research, University of Southern Denmark, Odense, Denmark

Background: Many parents feel ill-equipped to prepare children (<18) for the death of a parent from incurable cancer. Within the English-speaking context, an evidence-based, theory-driven communication framework has been positively implemented to equip health and social care professionals (HSCPs) to support parents to tell their children about their incurable cancer.  Translating and culturally adapting this framework into Danish will support family-centred cancer care in Denmark. 

Procedures: The Participatory and Iterative Process Framework for Language Adaptation is guiding this ongoing process. Initial approval and consultation were secured with the developers. An expert panel of clinicians, researchers, and translators was established (step 1). Forward translation into Danish was independently conducted by three translators, leading to the first target translation version (step 2). Back-translation was conducted by an independent, native English-speaking research assistant unfamiliar with the original version (step 3). A review of the back-translation was conducted by the Danish team and the original developers (step 4). Based on team discussions, the translation was harmonised to the Danish context (step 5). Next steps will include a focus group with clinicians working with parental incurable cancer to focus on feasibility and implementation potential (step 6).  Thereafter, recommended cultural adjustments will be made (step 7). At this juncture, parents with incurable cancer and their partners will be invited to discuss the translated framework (step 8), informing further cultural adjustments (step 9). The translated framework will be proofread (step 10) and final language adaptations made (step 11). 

Conclusion and clinical implications: The translated and culturally adapted framework will equip Danish HSCPs to support parents with incurable cancer to tell their children about their poor prognosis. This may be supportive not only to the HSCPs and patients but also to the well-parents and the children, beyond the death of the parent, lessening the risk of complicated grief.