Open Access“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy
Author(s) -
Asiedu Gladys B.,
Ridgeway Jennifer L.,
Carroll Katherine,
Jatoi Aminah,
Radecki Breitkopf Carmen
Publication year - 2018
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.12691
Subject(s) - autonomy , informed consent , thematic analysis , psychology , grounded theory , social psychology , medicine , qualitative research , sociology , political science , alternative medicine , law , social science , pathology
Objective This study employs the concept of relational autonomy to understand how relational encounters with family members ( FM s) and care providers may shape decisions around ovarian cancer patients’ clinical trial ( CT ) participation. The study also offers unique insights into how FM s view patients’ decision making. Methods In‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FM s. 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 FM s 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. FM s 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.