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abstract:
“Little Big Things”: A Qualitative Study of Ovarian Cancer Survivors and Their Experiences With the Health Care System
Purpose: Navigation of
a complex and ever-changing health care system can be stressful and
detrimental to psychosocial well-being
for patients with serious illness. This study
explored women’s experiences with navigating the health care system
during treatment
for ovarian cancer.
Methods: Focus groups
moderated by trained investigators were conducted with ovarian cancer
survivors at an academic cancer center.
Personal experiences with cancer treatment,
provider relationships, barriers to care, and the health care system
were explored.
Sessions were audiotaped, transcribed, and coded
by using grounded theory. Subsequently, one-on-one interviews were
conducted
to further evaluate common themes.
Results: Sixteen
ovarian cancer survivors with a median age of 59 years participated in
the focus group study. Provider consistency,
personal touch, and patient advocacy positively
affected the care experience. Treatment with a known provider who was
well
acquainted with the individual’s medical history
was deemed an invaluable aspect of care. Negative experiences that
burdened
patients, referred to as the “little big
things,” included systems-based challenges, which were scheduling, wait
times, pharmacy,
transportation, parking, financial, insurance,
and discharge. Consistency, a care team approach, effective
communication,
and efficient connection to resources were
suggested as ways to improve patients’ experiences.
Conclusion:
Systems-based challenges were perceived as burdens to ovarian cancer
survivors at our institution. The role of a consistent,
accessible care team and efficient delivery of
resources in the care of women with ovarian cancer should be explored
further.
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