We conducted a qualitative study to evaluate the perceptions and needs with respect to healthcare of female survivors of breast cancer. While many surveys have examined quality of life issues in long-term cancer survivors, few have focused on their specific healthcare needs. Furthermore, while traditional surveys can document attitudes toward predetermined issues, qualitative studies as this one provide a rich, in-depth evaluation of participants’ experiences, with emerging themes that can more fully describe individual experiences and perceptions.
Survivors’ experiences accessing healthcare are fraught with difficulties finding a provider who can both address their particular needs and coordinate their care. Attitudes about survivorship, in general, fears of cancer recurrence, past experiences, self-perception, agency, and spirituality and faith, all influence survivors’ expectations and perceptions about healthcare. Friends, family, and other survivors often motivate them. Overall, several factors complicate healthcare above and beyond problems related to coordination. While flaws in medical record accessibility and inconveniences of juggling multiple medical appointments with assorted providers clearly pose a challenge, other and nonsystemic problems also affect their quality of care. Providers and survivors have dissenting attitudes about their appropriate place in the healthcare delivery system. Distinctions are blurred between late effects of cancer and cancer therapy, and preexisting conditions. Fear of recurrence is a pervasive worry, even 8 years after cancer was initially diagnosed.
Three overarching themes emerged during the focus groups. These themes are related in a way that parallels Bandura’s social cognitive theory. Social cognitive theory pinpoints three, interdependent, mutually influencial factors integral in developing, sustaining, and intervening upon behavioral patterns—behavior, personal factors, and environmental factors [15
]. Several prior studies have used social cognitive theory to suggest means by which to increase patient confidence in self-management of disease and self-efficacy [16
]. In terms of the current study, Bandura’s concept of behavior
resembles our personal experiences
category, wherein participants volunteered stories about their healthcare actions, habits, practices, and history. Bandura’s concept of personal factors
maps closely onto our personal attitudes
category, wherein participants shared their own beliefs, values, and feelings. Finally, Bandura’s concept of environment
is similar to our social influences
category, which includes stories of how friends, family, and others in survivors’ lives impact their experience and behaviors. Our findings demonstrate another useful application of the theory, namely, for understanding the complex dynamics of patient-centered care, wherein providers must be sensitive to social, behavioral, and environmental factors in order to deliver respectful, responsive healthcare.
Other studies confirm the importance of themes that emerged in our findings, including memories of cancer diagnosis, recurrence fears, and prevention concerns [22
]. Survivors manage feelings of uncertainty and recurrence by participating in active surveillance and information gathering [24
]. Our study demonstrates that other survivorship stories also influence patients’ level of certainty about their condition.
Our study underscores the importance of physician type and communication. Survivors trust primary care physicians more for general care than knowledge about cancer follow-up and symptom treatment [26
]. Moreover, they are sensitive about how providers communicate with them and prefer being treated within an overall management team [24
]. Distrust in knowledge of primary care providers, feelings of guilt relying on cancer specialists, and difficulties integrating multiple sites of care might impede survivors’ satisfaction with care. We also confirm prior findings on survivors’ concerns about primary care providers’ ability to provide care for cancer-related issues and difficulty communicating with cancer specialists [27
]. Improved patient–provider communication, in turn, helps address thoughts of recurrence [28
Our study is limited insofar as it is qualitative and is therefore not generalizable. It cannot map the causality linking reciprocally-related codes. Our sample was very homogeneous, and we did not organize focus groups by participant demographics. Therefore, we cannot discuss differences in attitudes between various ethnicities, socioeconomic groups, or age groups. Additional studies should examine whether heterogeneous focus group design yields consistent results.
This is one of few studies to focus on survivors’ opinions of the quality of their healthcare, a qualitative study that provides a rich, in-depth evaluation of participants’ experiences, with emerging themes that can more fully describe individual experiences and perceptions. It provides healthcare professionals with first-hand information from patients with which to broaden and improve patient–provider communication and enhance healthcare delivery in the transition to survivorship care.
Previous studies have recommended providing comprehensive information and support to survivors, offering regular follow-up visits to improve provider–patient relationships, and giving survivors more choice in healthcare decisions [3
]. Our findings suggest that a multifactorial, holistic approach to healthcare would achieve better results than merely an administrative one. Solutions, such as providing cancer treatment summaries to all practitioners involved in the care of breast cancer survivors, would help resolve many problems broached in our study by consolidating and making readily available the numerous medical issues and recommendations that survivors accrue over time, switching from provider to provider [29
]. While administrative solutions can eliminate steps needed to get care, clinicians must also implement communication changes in their interactions with patients to enhance positive attitudes and leverage social influences.