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'Ultimately, mom has the call': Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy
- Source :
- Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
- Publication Year :
- 2018
- Publisher :
- Wiley, 2018.
-
Abstract
- Objective This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients’ clinical trial (CT) participation. The study also offers unique insights into how FMs view patients’ decision making. Methods In‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA). Results Patients’ relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors’ recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FMs maintained that patients have the “final say,” indicating an individualistic autonomy. However, maintaining the “final say” in the decision‐making process is constitutive of patients’ relationships, emphasizing a relational approach to autonomy. FMs support patients’ autonomy and they do so particularly when they believe the patient is capable of making the right choices. Conclusions Although ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.
- Subjects :
- Male
Psychotherapist
Process (engineering)
media_common.quotation_subject
Decision Making
Relational autonomy
Choice Behavior
relational autonomy
Interviews as Topic
trial decision making
03 medical and health sciences
Individualism
0302 clinical medicine
Informed consent
Humans
Family
030212 general & internal medicine
Qualitative Research
media_common
Ovarian Neoplasms
Clinical Trials as Topic
Physician-Patient Relations
Enthusiasm
Informed Consent
Public Health, Environmental and Occupational Health
clinical trial
family members
Middle Aged
Original Research Paper
Clinical trial
ovarian cancer
030220 oncology & carcinogenesis
oncology
qualitative
Personal Autonomy
Female
Patient Participation
Psychology
Original Research Papers
Autonomy
Social status
Subjects
Details
- ISSN :
- 13696513
- Volume :
- 21
- Database :
- OpenAIRE
- Journal :
- Health Expectations
- Accession number :
- edsair.doi.dedup.....cb2d9c5b0b2c61d468fcd174073e40f4