"Little Big Things": A Qualitative Study of Ovarian Cancer Survivors and Their Experiences With the Health Care System

Abstract

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.

FIG 1.

Participant recruitment flowchart. *Reasons for not participating: geographic (n = 8), in treatment (n = 2), other logistical conflict (n = 5).