Challenges for Latina Breast Cancer Patient Survivorship Care in a Rural US-Mexico Border Region

Abstract

Rural US Latina breast cancer patients experience language barriers, health literacy issues, and limited access to health care resources that negatively impact survivorship care. This study explored the challenges to survivorship care for rural Latina breast cancer (BC) patients and approaches to supporting survivorship care plans (SCP) from the stakeholders’ perspectives. Data were collected via eight focus groups (n = 40) and individual interviews (n = 4) with Latina BC patients, family caregivers, and health care professionals in a rural US-Mexico Border region. Interviews were audio-taped, transcribed, translated, and analyzed using thematic analysis. Themes related to the patient’s SCP challenges included: (1) lack of knowledge of treatment information, (2) lack of proactive health behavior, (3) gaps in information for care coordination, (4) psychological distress, and (5) difficulty retaining health information. Respondents expressed that the SCP document could fill patient information gaps as well as support patient communication with their clinicians and family. Rural BC patients demonstrated an acute need for information and active engagement in their survivorship care. The findings indicate the importance of addressing challenges for survivorship care on multiple dimensions: Cognitive, behavioral, social, and structural. Developing a culturally tailored SCP intervention will be imperative to support survivorship care.

Relationship between survivorship care plans and unmet information needs, quality of life, satisfaction with care, and propensity to engage with, and attend, follow‐up care

“…Similar to prior research, our participants reported high levels of unmet information needs, but these were lower among SCP recipients 15,16,36,37 . Survivors often report not only a lack of survivorship information 38 but also difficulty collecting and processing information as a result of, for example, psychological distress, 39 low health literacy, 36 and short consultations with health care providers 40 .…”

“…40 Knowledge deficits often arise for survivors of childhood cancer as a result of their age at diagnosis and treatment 41 and possible dependence on their parents to relay information provided to them during this period. Ko et al 36 noted in interviews with Latina breast cancer survivors, their caregivers, and health care providers that SCPs can act as a memory aid, which addresses gaps in patient information and their information needs. This observation has been reported in several studies, 42,43 and demonstrates how SCPs function as a reference tool and repository of patient information, which may be particularly beneficial for survivors of childhood cancer.…”

“…Knowledge deficits often arise for survivors of childhood cancer as a result of their age at diagnosis and treatment 41 and possible dependence on their parents to relay information provided to them during this period. Ko et al 36 . noted in interviews with Latina breast cancer survivors, their caregivers, and health care providers that SCPs can act as a memory aid, which addresses gaps in patient information and their information needs.…”

Qualitative analysis of cancer care experiences among rural cancer survivors and caregivers

“…Diagnosis and treatment experience is unique to cancer patients, necessitating qualitative research to understand their perspectives 17 . Previous rural focus group studies of cancer care and survivorship were conducted mostly in the Southern region of the United States or focused on African American or Hispanic residents 18–21 . Nebraska is a predominantly White, mostly rural state; of the 93 counties, 48 are classified as rural and 31 as frontier (fewer than 7 residents per square mile) 22 .…”

“… 17 Previous rural focus group studies of cancer care and survivorship were conducted mostly in the Southern region of the United States or focused on African American or Hispanic residents. 18 , 19 , 20 , 21 Nebraska is a predominantly White, mostly rural state; of the 93 counties, 48 are classified as rural and 31 as frontier (fewer than 7 residents per square mile). 22 The 12 cancer centers accredited by the American College of Surgeons Commission on Cancer, located in counties classified as 2‐5 on the Rural‐Urban Continuum Code (RUCC), are affiliated with the Nebraska Cancer Coalition (NC2).…”