PhD thesis
Patient, family caregiver and nurse involvement in shared decision-making in palliative cancer care
Title of trial lecture
'Shared decision-making as a communication model: comparing theoretical frameworks and practical implications'
- Trial lecture starts at 10:15
- Public defence starts at 12:30
Read the thesis in Nasjonalt VitenArkiv (NVA)
Disputation chair: Head of Department Dag Tomas Sagen Johannesen, Department of Health and Nursing Science, UiA
Assessment committee:
- First opponent: Professor Agneta Wennman-Larsen, Högskolan Sofiahemmet
- Second opponent: Professor Lena Heyn, USN
- Head of assessment committee: Associate Professor Trygve Johannes Lereim Sævareid, UiA
Supervisors in the doctoral work:
- Main supervisor: Professor Gudrun Rohde, Department of Health and Nursing Science, UiA
- Co-supervisor: Professor Mariann Fossum, Department of Health and Nursing Science, UiA
- Co-supervisor: Principal Research Fellow Bella Vivat, University College London (UCL)
Summary of thesis
People living with incurable cancer, family caregivers and healthcare professionals face complex and emotionally demanding decisions about cancer treatment and palliative care. Shared decision-making, an approach where patients and professionals make decisions together, is highlighted as central to high-quality, person-centred cancer care. However, the desire to be involved varies, and serious illness can reduce both the ability and willingness to participate in such processes. Previous studies suggest that patients may experience a gap between their wish to be involved and their actual participation.
The overall aim of this thesis was to gain in-depth knowledge and increased understanding of shared decision-making in palliative cancer care by exploring the experiences and perspectives of people with incurable cancer, their family caregivers, nurses and other healthcare professionals. A further aim was to expand knowledge about the roles and contributions of nurses to shared decision-making processes. The thesis comprises three studies: a systematic review of existing research (Study 1), qualitative interviews with patients and their family caregivers (Study 2), and interviews with nurses (Study 3). The interview studies were conducted at two Norwegian hospitals.
The findings show that shared decision-making about treatment and care in the context of incurable cancer is a complex, relational process shaped by the existential nature of the situation and ethical dilemmas. Many patients and family caregivers expressed uncertainty about their potential and capacity to participate, and their experience of involvement was shaped by differing wishes and expectations for involvement.
The findings also revealed persistent ambiguity surrounding nurses’ contributions to shared decision-making. Although nurses were recognised as potential contributors to shared decision-making, it was unclear – for patients, family caregivers and nurses themselves – how nurses could and should be involved. In addition, structural conditions, organisational culture and individual characteristics were found to affect the potential for genuine and meaningful participation in shared decision-making.
The thesis highlights the need for a clearer understanding of what shared decision-making entails in palliative cancer care, including a broader view of which decisions are suitable for shared decision-making and recognition that the process also includes what happens before and after consultations where significant decisions are to be made.
People with incurable cancer and their families may require more support to participate in shared decision-making than they currently receive. Strengthening shared decision-making in palliative care may be achieved through an interprofessional approach in which nurses play a more active role. This will require not only training for healthcare professionals, but also structural changes that promote continuity, time for dialogue and ethical reflection, and interprofessional collaboration.
About the candidate
Jannicke Rabben (b. 1976) has been a PhD candidate at the Department of Health and Nursing Science at the University of Agder (UiA) from 2022 to 2025.
Rabben is a trained nurse from the former Agder University College (now UiA) and has previously worked at Sørlandet Hospital as a nurse, clinical development nurse, and oncology nurse specialist. She completed her postgraduate education in oncology nursing at Diakonova University College in 2007. Later, she worked as an advisor/senior advisor and project manager at the Norwegian Cancer Society and earned a master’s degree in clinical nursing science at UiA in 2014. In her master’s thesis, she explored family caregivers’ experiences of seeking complementary and alternative treatment for incurable cancer. Since 2018, Rabben has been employed at the Department of Health and Nursing Science at UiA.
During her doctoral work, Rabben has been affiliated with the national research school PROFRES, and her PhD project, “Shared decision-making in palliative cancer care”, has been funded by the University of Agder.
What to do as an online audience member
The disputation is open to the public. To follow the trial lecture and the public defence online, register on Zoom.
We ask online audience members to join no earlier than 10 minutes in advance. After these times, you can leave and rejoin the meeting at any time.
Opponent ex auditorio:
Deadline for the public to pose questions is during the break between the two opponents. Questions ex auditorio can be submitted to disputation chair dag.t.johannesen@uia.no, cc to PhD adm emma.e.horneman@uia.no.