TY - JOUR
T1 - Qualitative analysis of cancer care experiences among rural cancer survivors and caregivers
AU - Ratnapradipa, Kendra L.
AU - Ranta, Jordan
AU - Napit, Krishtee
AU - Luma, Lady Beverly
AU - Robinson, Tamara
AU - Dinkel, Danae
AU - Schabloske, Laura
AU - Watanabe-Galloway, Shinobu
N1 - Funding Information:
Survivors and caregivers identified organization‐based supports that helped them address barriers to care. Being referred to and receiving supportive services from the cancer centers was valued by participants, although some expressed a reluctance to fully utilize such services, characterized by “It just seems like I'm always asking for help.” Another participant expressed gratitude about being reminded that support services are there if you need them. Support organizations included the cancer centers, local foundations, organizations that helped fundraise to cover treatment‐related costs, and pharmacies. The “full‐time social worker [was] really great on trying to find assistance with gas cards.” Others noted help applying for financial assistance and prescription drug programs, hotel discounts and money for meals (for those traveling for care), and grocery and rent assistance. A local support organization also provided housekeeping assistance. One survivor mentioned an organization that assisted with prosthesis. However, not all participants were aware of such support services, and others indicated that they were aware of the local foundation but did not qualify for services because they lived too far away.
Funding Information:
The cancer needs assessment was funded by the University of Nebraska Medical Center, Fred & Pamela Buffett Cancer Center, and its Cancer Center Support Grant (P30 CA036727). Study data were collected and managed using REDCap electronic data capture tools hosted at UNMC. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies. REDCap at UNMC is supported by Research IT Office funded by Vice Chancellor for Research (VCR). This publication's contents are the sole responsibility of the authors and do not necessarily represent the official views of the VCR and NIH.
Funding Information:
Study data were collected and managed using REDCap electronic data capture tools hosted at UNMC. REDCap (Research Electronic Data Capture) is a secure, web‐based application designed to support data capture for research studies. REDCap at UNMC is supported by Research IT Office funded by Vice Chancellor for Research (VCR). This publication's contents are the sole responsibility of the authors and do not necessarily represent the official views of the VCR and NIH.
Publisher Copyright:
© 2022 The Authors. The Journal of Rural Health published by Wiley Periodicals LLC on behalf of National Rural Health Association.
PY - 2022/9/1
Y1 - 2022/9/1
N2 - Purpose: Rural (vs urban) patients experience poorer cancer outcomes and are less likely to be engaged in cancer prevention, such as screening. As part of a community needs assessment, we explored rural cancer survivors’ and caregivers’ experiences, perceptions, and attitudes toward cancer care services. Methods: We conducted 3 focus groups (N = 20) in Spring 2021 in rural Nebraska. Findings: Three patterns of cancer diagnosis were regular care/screening without noticeable symptoms, treatment for symptoms not initially identified as cancer related, and symptom self-identification. Most participants, regardless of how diagnosis was made, had positive experiences with timely referral for testing (imaging and biopsy) and specialist care. Physician interpersonal skills set the tone for patient-provider communication, which colored the perception of overall care. Participants with physicians and care teams that were perceived as “considerate,” “compassionate,” and “caring” had positive experiences. Participants identified specific obstacles to care, including financial barriers, transportation, and lack of support groups, as well as more general cultural barriers. Survivors and caregivers identified organization-based supports that helped them address such barriers. Conclusions: Rural populations have unique perspectives about cancer care. Our results are being used by the state cancer coalition, state cancer control program, and the National Cancer Institute-designated cancer center to prioritize outreach and interventions aimed to reduce rural cancer disparities, such as revitalizing lay cancer navigator programs, conducting webinars for primary care and cancer specialty providers to discuss these findings and identify potential interventions, and collaborating with national and regional cancer support organizations to expand reach in rural communities.
AB - Purpose: Rural (vs urban) patients experience poorer cancer outcomes and are less likely to be engaged in cancer prevention, such as screening. As part of a community needs assessment, we explored rural cancer survivors’ and caregivers’ experiences, perceptions, and attitudes toward cancer care services. Methods: We conducted 3 focus groups (N = 20) in Spring 2021 in rural Nebraska. Findings: Three patterns of cancer diagnosis were regular care/screening without noticeable symptoms, treatment for symptoms not initially identified as cancer related, and symptom self-identification. Most participants, regardless of how diagnosis was made, had positive experiences with timely referral for testing (imaging and biopsy) and specialist care. Physician interpersonal skills set the tone for patient-provider communication, which colored the perception of overall care. Participants with physicians and care teams that were perceived as “considerate,” “compassionate,” and “caring” had positive experiences. Participants identified specific obstacles to care, including financial barriers, transportation, and lack of support groups, as well as more general cultural barriers. Survivors and caregivers identified organization-based supports that helped them address such barriers. Conclusions: Rural populations have unique perspectives about cancer care. Our results are being used by the state cancer coalition, state cancer control program, and the National Cancer Institute-designated cancer center to prioritize outreach and interventions aimed to reduce rural cancer disparities, such as revitalizing lay cancer navigator programs, conducting webinars for primary care and cancer specialty providers to discuss these findings and identify potential interventions, and collaborating with national and regional cancer support organizations to expand reach in rural communities.
KW - cancer care
KW - cancer prevention
KW - focus group
KW - qualitative analysis
KW - rural health
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U2 - 10.1111/jrh.12665
DO - 10.1111/jrh.12665
M3 - Article
C2 - 35381622
AN - SCOPUS:85127423398
SN - 0890-765X
VL - 38
SP - 876
EP - 885
JO - Journal of Rural Health
JF - Journal of Rural Health
IS - 4
ER -