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

Introduction

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. 

Keywords

Hemato-oncological diseases, adolescents and young adults, autonomy, decision making, DIPEx, mixed methods research.

Project duration

2018-2021

Approach/methodology

The study will use a mixed methods approach (Meissner et al. 2011; Preissle et al. 2015) to analyse the psychosocial dimension of the experience of the study population: 

1. Critical analysis of the medical and bioethical literature on autonomy, relations and (shared) decision-making.

2. Online survey on perceived quality of life of the study population and on decision making style.

3. Qualitative analysis of in-depth, narrative interviews on patients’ subjective experience, using standard DIPEx methodology (Health Experience Research Group 2017).

Respondents from phase 1 will be screened to define a maximum variation sample (Coyne 1997) of 30-40 patients. Interviews will be face to face, audio and video recorded (according to the willingness of the interwiewee). They will start with a narrative opening section, inviting interviewees to describe what has happened since they first suspected a problem, followed by a semi-structured section investigating the specific research questions of this project. The interviews will be transcribed, analysed and coded with software for qualitative analysis (MaxQDA) in order to explore the subjective experience regarding the domains investigated (Ziebland and McPherson 2006; Strauss and Corbin 1998). Correlations between findings of the qualitative part and of the quantitative part will be explored by means of inferential statistics, testing hypotheses emerged during the qualitative analysis. Selected materials from the interviews will used to develop a narrative-based support tool, which will be made available online at www.dipex.ch. The support tool will not consist of information for and against one intervention as compared to another; rather, users will be exposed to peers’ considerations and reflections on their past or pending choices, which has been reported to provide encouragement and improve self-management (Ziebland, Lavie-Ajayi, and Lucius-Hoene 2015; Newhouse et al. 2016).

Aims

This study will combine a systematic collection and analysis of interviews with people about their experience of illness with evidence of the effects of treatments, and information about support groups and other resource materials. Such a Swiss Database of Individual Patients' Experience of illness (DIPEx) is a valuable resource in the field of patient and healthcare communication. The Swiss database provides a methodologically rigorous collection of interviews about patients’ real-life experiences with health issues and presents them as video- and/or audio-sequences on an online portal open to the public. Patients’ recollections of their lives regarding Alzheimers and dementia is collected through narrative interviews, evaluated according to an established method of qualitative social research, and prepared for dissemination to the public by means of an online patient narratives platform. 

Expected outcomes

Relevance for cancer specific health services 

The relation between patient and provider has increasingly been recognized as a central element of high-quality patient-centred care. However, research on patient autonomy and participation in the context of hemato-oncological illnesses is sporadic and scarce, with few studies conducted on small numbers of patients. These studies suggest that in this patient group there is a lower desire for participation in comparison to people affected by other malignant neoplasias, probably due to the overwhelming complexity of hemato-oncological diseases and to the immediate threat to life they pose⁠. In spite of these difficult circumstances hemato-oncological patients deserve an adequate analysis of how they can best be engaged in their care and in the decisions to be taken. Adequate instruments are needed that support a move from models of care that are either paternalistic or centred on an overly individualist notion of autonomy towards a patient-centred model assuming a relational environment where autonomous choices by necessity have an impact on others, and others have an impact on these decisions. The project aims to provide an account of patient experiences and a decision aid that will facilitate the continuous improvement of health services in oncology. 

 

DIPEx (Database of Individual Patient Experiences)

The patient experiences collected will not only be used for the proposed study but will also become a module for the new Swiss branch of the international DIPEx project (hosted by the Institute of Biomedical Ethics at the University of Zurich). DIPEx is a tool for patient empowerment and medical education originally conceived in the UK, now adopted in 12 countries⁠. Selected videoclips of the interviewees will be uploaded on the website www.dipex.ch in order to serve as a source of insight and (decision) support for patients as well as for relatives and care providers, stimulating improvements in this healthcare domain.

 

Planned publications

-    A paper focused on patient experience;
-    A paper focused on implications for clinical practice;
-    A paper focused on aids for shared decision-making and supportive tools.