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Institute of Biomedical Ethics and History of Medicine (IBME)

Young hemato-oncological patients

Autonomy and relations: investigating the role of shared decision making in young hemato-oncological patients.

Many cancer patients need to make difficult and far-reaching decisions regarding their medical care. Hemato-oncological patients in particular find themselves confronted with complex choices connected with personal life (quit a job, leave university, move to another city, radically changing lifestyle), or springing from the medical condition in itself (evaluating and accepting the cure process, participating to clinical trials, undergoing specific high risk treatments such as bone marrow transplantation or chemotherapy). The relationship with the persons that care for them (both health professional and relatives) gains special relevance under these circumstances. How decision-making processes are shaped within these relationships can have an important effect on the quality of care as perceived by the patient.

The proposed project will focus on young adults that are confronted with the serious challenge of a hemato-oncological disease at a time when their life goals, values and priorities are just unfolding. Patients in this age group can increasingly claim to be autonomous and competent to make their own decisions. At the same time, parents and other close relationships can be expected to have a significant supportive role. Sensitive and well-coordinated shared decision-making is of paramount importance in such situations. 

However, little is known about how young hemato-oncologic patients perceive the decision-making processes, what informational and supportive needs they have, and what they value or miss in their relationship with their care providers. The project aims to address this gap. 

A psychosocial and mixed methods approach will explore the experiences of young adults facing a severe hemato-oncological disease, with a focus on formal and informal relationships (I.e with medical professionals and relatives) and decision-making processes. In particular, the study will probe which supportive needs patients perceive when dealing with complex choices and how (well) they are currently addressed. It will also invite participants to convey what worked well for them when they were confronted with difficult choices and what suggestions they may have for other patients, relatives and care providers. Selected interview materials of the qualitative part will be used for the development of a narrative-based support tool.

The project aims to contribute to the evidence base of young adult patients’ experiences of decision-making in the context of a hemato-oncological disease, to provide insights that can be helpful for further cancer care improvement and to offer a validated, narrative-based support tool that can help prepare patients, medical professionals and relatives for shared decision-making.