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. 2018 Dec;21(6):981-989.
doi: 10.1111/hex.12691. Epub 2018 Apr 14.

"Ultimately, mom has the call": Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

Gladys B Asiedu  1   2 , Jennifer L Ridgeway  1 , Katherine Carroll  1   3 , Aminah Jatoi  4 , Carmen Radecki Breitkopf  2
Affiliations

"Ultimately, mom has the call": Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

Gladys B Asiedu et al. Health Expect. 2018 Dec.

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.

Keywords: clinical trial; family members; oncology; ovarian cancer; qualitative; relational autonomy; trial decision making.

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