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The decision making process in women diagnosed with estrogen receptor-positive breast cancer experiencing side effects related to oral endocrine therapy

Indiana University-Purdue University Indianapolis (IUPUI) / Oral endocrine therapy (OET) is standard therapy for millions of estrogen
receptor-positive breast cancer survivors (ER+BCS). OET reduces recurrence, mortality,
and metastasis. ER+BCS often do not take their OET as recommended due to adverse
side effects. The purpose of this dissertation was to develop an explanatory framework
of decision making by women with ER+ breast cancer who report experiencing side
effects from OET. This project was comprised of two components.
The first component was a systematic review with three main findings: (1) side
effects negatively impact OET non-adherence, (2) there is an absence of decisional
supports provided to or available for ER+BCS who are experiencing OET side effects,,
and (3) ER+BCS likely have unmet decisional needs related to OET.
The second component was a grounded theory study that included 31 ER+BCS
reporting OET side effects. During a single semi-structured interview, participants
described the experience of OET over time. This study produced two qualitatively
derived projects.
First, a theoretical framework was developed that depicted four stages through
which the experience of OET decision making unfolded. The stages were (1) being told
what I need to do to live, (2) doing what I need to do to live, (3) enduring what I need to
do to live, and (4) deciding how I want to live.
Second, a typology was developed that depicted six sources of external
decisional supports (healthcare providers, husbands, other breast cancer survivors,
friends and family, the internet and other media sources, and God) that met four types of decisional needs (information about OET and its side effects, in-depth discussions about
side effects, help in managing side effects, and emotional support).
Findings can be used to develop interventions, such as decision aids, to
promote quality decision making in women experiencing OET side effects.

Identiferoai:union.ndltd.org:IUPUI/oai:scholarworks.iupui.edu:1805/12837
Date06 February 2017
CreatorsMilata, Jennifer Lynn
ContributorsCarpenter, Janet S., Draucker, Claire Burke, Otte, Julie, Zimet, Greg
Source SetsIndiana University-Purdue University Indianapolis
Languageen_US
Detected LanguageEnglish
TypeDissertation

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