• Alina Senßfelder, Matthias Havemann, Pedrosa CarrascoAnna JAJ0000-0002-4757-9019Department of Medicine, Philipps-University of Marburg, Marburg, Germany., Pia von Blanckenburg, and Carola Seifart.
• Department of Clinical Psychology and Psychotherapy, Philipps-University of Marburg, Marburg, Germany.
• Palliat Med. 2024 Oct 1; 38 (9): 105410641054-1064.

BackgroundEvery advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking.AimTo understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers.DesignA qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis.Setting/ParticipantsFifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital.ResultsWe developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood.ConclusionsThe developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood.

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