The psychosocial needs of underserved breast cancer survivors and perspectives of their clinicians and support providers.

PURPOSE: Breast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs. METHODS: Semi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics. RESULTS: There was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding. CONCLUSIONS: This study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.

What are patient navigators doing, for whom, and where? A national survey evaluating the types of services provided by patient navigators.

OBJECTIVE: A nationwide cross-sectional study was conducted to assess patient navigator, patient population, and work setting characteristics associated with performance of various patient navigation (PN) tasks. METHODS: Using respondent-driven sampling, 819 navigators completed a survey assessing frequency of providing 83 PN services, along with information about themselves, populations they serve, and setting in which they worked. Analyses of variance and Pearson correlations were conducted to determine differences and associations in frequency of PN services provided by various patient, navigator, and work setting characteristics. RESULTS: Nurse navigators and navigators with lower education provide basic navigation; social workers typically made arrangements and referrals; and individuals with higher education, social workers, and nurses provide treatment support and clinical trials/peer support. Treatment support and clinical trials/peer support are provided to individuals with private insurance. Basic navigation, arrangements and referrals, and care coordination are provided to individuals with Medicaid or no insurance. CONCLUSION: Providing basic navigation is a core competency for patient navigators. There may be two different specialties of PN, one which seeks to reduce health disparities and a second which focuses on treatment and emotional support. PRACTICE IMPLICATIONS: The selection and training of patient navigators should reflect the specialization required for a position.

Facilitators of Survivorship Care Among Underserved Breast Cancer Survivors: a Qualitative Study.

Research investigating facilitators of survivorship care among underserved breast cancer survivors (BCS) is sparse. This study aimed to explore facilitators of survivorship care among underserved BCS within the first 5 years following chemotherapy, radiation, or surgery for breast cancer. In-depth interviews were conducted, using a semi-structured interview guide, with underserved BCS exploring survivorship care experiences. Content analysis of the verbatim transcripts was applied, and results were summarized according to themes related to facilitators of breast cancer survivorship care. Interviews were conducted with 25 BCS. Eight main themes were identified: coordination of care; positive perceptions of health care providers; communication between patient and health care providers; financial and insurance facilitators; information, classes, and programs provided; assistance provided by organizations and health care professionals; transportation facilitators; and job flexibility. This study provides a comprehensive look at facilitators of survivorship care among underserved BCS. BCS endorsed several facilitators of their survivorship care, mainly at the interpersonal, organizational, and societal level. This study adds to the research literature on catalysts of care among underserved BCS. Results from this study are currently being used to inform a patient navigation intervention to facilitate care among this population.

Barriers and facilitators to endocrine therapy adherence among underserved hormone-receptor-positive breast cancer survivors: a qualitative study.

PURPOSE: To evaluate the barriers and facilitators to taking anti-hormonal medications among medically and historically underserved breast cancer survivors within the first 5 years post chemotherapy, radiation, and/or surgery. METHODS: The current study was framed within the National Institutes of Health Centers for Population Health and Health Disparities Model (NIHCPHHD Model). Twenty-five historically or medically underserved breast cancer survivors participated in an in-depth interview, in either English or Spanish. Interviews were audio recorded and transcribed verbatim. Interview data were analyzed using content analysis. RESULTS: Anti-hormonal medication adherence was facilitated in several ways, including establishing a routine of medication taking, leaving the medicine in a visible or easily accessible place, taking the medication with other medications, reducing the cost of medicine, using a pillbox, understanding the negative consequences of lack of adherence, and having positive interactions with physicians. Side effects were the most commonly mentioned barrier to medication adherence. CONCLUSIONS: Similar to other research, this qualitative study of medically and historically underserved breast cancer survivors in the USA found that side effects are the most frequently endorsed barrier to anti-hormonal medication adherence. Conversely, there were a number of facilitators of correct and consistent anti-hormonal medication use. The management of side effects is critically important to increase adherence to anti-hormonal medications. Health care providers, support providers, and caregivers can encourage breast cancer survivors to better adhere to anti-hormonal medications using a number of approaches that have been successful for other women.

Training in Patient Navigation: A Review of the Research Literature.

Despite the proliferation of patient navigation programs designed to increase timely receipt of health care, little is known about the content and delivery of patient navigation training, or best practices in this arena. The current study begins to address these gaps in understanding, as it is the first study to comprehensively review descriptions of patient navigation training in the peer-reviewed research literature. Seventy-five patient navigation efficacy studies published since 1995, identified through PubMed and by the authors, were included in this narrative review. Fifty-nine of the included studies (79%) mentioned patient navigation training, and 55 of these studies additionally provided a description of training. Most studies did not thoroughly document patient navigation training practices. Additionally, several topics integral to the role of patient navigators, as well as components of training central to successful adult learning, were not commonly described in the research literature. Descriptions of training also varied widely across studies in terms of duration, location, format, learning strategies employed, occupation of trainer, and content. These findings demonstrate the need for established standards of navigator training as well as for future research on the optimal delivery and content of patient navigation training.