Short summary

Shared decision-making is about helping patients who are faced with difficult choices about their treatment. Here, the patient makes the decision in dialogue with the clinician, taking into account professional knowledge and the patient's personal preferences. Relatives are often involved in the decision-making process and play an important role in the patient's treatment programme, yet they feel overlooked in the healthcare system. The project provides insight into the role of relatives in shar

Rationale

Relatives often participate in hospital decision-making, yet they often feel neglected within the healthcare system. Studies indicate that many experience overwhelming pressure, especially when providing care beyond their capabilities. Active involvement of relatives in patient care, aligning with their abilities, needs, and desires, enhances patient safety, compliance, and overall experiences for both patients and relatives. Despite this, the role of relatives in Shared Decision-Making (SDM) and how to optimize triadic SDM remains inadequately explored. This study focuses on consultations with prostate cancer patients, aiming to explore relatives' experiences, assess their benefits, and understand patients' and clinicians' perceptions of their roles in these conversations. Some relatives feel more like an 'appendage/dependents' than a significant relatives. Nevertheless, the treatment that is decided upon can often affect the relative's life situation and may even require the relative to take on a supportive role as part of the treatment programme. The challenge is to bring relatives into play in a meaningful way, which is what this 'Relatives or Dependents' project aims to fulfil. Shared decision-making has a positive impact on the patient's experience of satisfaction with the choice of disease treatment. The project focuses on the fact that relatives also have a role in the conversation about treatment. In shared decision-making, it is the health care professional who is the expert in the diagnosis. The patient is the expert in their own life and often the relative is deeply knowledgeable about the patient's situation and can therefore provide good support in decision-making, but it requires that they are involved in a meaningful way. Little is known about the role of relatives in shared decision-making. Do relatives benefit from the conversations? How do patients and clinicians and nurses want relatives to be involved? AIM: The aim of the project is to gain knowledge about the role of relatives in decision-making in prostate cancer patients, which affects 4,500 men annually, and to develop a prototype tool that supports meaningful involvement of relatives in decision-making conversations. RESEARCH QUESTIONS What are relatives' experiences of the dialouge in the consultations? Do they benefit from the dialouge? If yes: when and why? If no: why not? What are the patient's and clinician's perceptions of the relatives' role in a dialouge around the decision? How can a prototype support meaningful involvement of relatives?

Description of the cohort

Prostate cancer patients (N=10) and relatives (N=10), nurses (6) and doctors (6). Inclusion critiria: Informants are invited using a purposive sampling strategy. The healthcare professional participants clinians are working at the department treating prostate cancer. Patients and relatives are selected equally in the following two criteria consisting of two groups: A. working age (often in their 50s and leading a working life). B. retired (the largest patient group). Both groups are included because they potentially have different life situations and values and needs that influence the way they perceive caregivers to participate meaningfully in their treatment choices and disease trajectory.

Data and biological material

Individual interivews, focus group interviews, observations, workshops

Collaborating researchers and departments

Center for Shared Decision Making

• Karina Dahl Steffensen

Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark

• Bettina Nørby

Urinvejskirurgisk afdeling, Vejle Sygehus

• Bettina Nørby

Syddansk Universitet, Kolding, Institut for Entreprenørskab og Relationsledelse

• Henry Larsen, Lektor
• Antje Knauff