Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates

Purpose African-American breast cancer survivors (AABCS) suffer the greatest from cancer recurrence, morbidity, and mortality in part due to the lack of cancer follow-up care and surveillance. To improve survival and survivorship, the Institute of Medicine advises that cancer survivors be provided a...

Full description

Saved in:
Bibliographic Details
Published in:Journal of cancer survivorship 2013-09, Vol.7 (3), p.283-291
Main Authors: Ashing-Giwa, Kimlin, Tapp, Carolyn, Brown, Shirley, Fulcher, Gingi, Smith, June, Mitchell, Eudora, Santifer, Rhonda H., McDowell, Kommah, Martin, Virginia, Betts-Turner, Betty, Carter, DeBorrah, Rosales, Monica, Jackson, Paris Adkins
Format: Article
Language:English
Subjects:
Adult
African Americans
African Americans - psychology
African Americans - statistics & numerical data
Aged
Aged, 80 and over
Breast cancer
Breast Neoplasms - ethnology
Breast Neoplasms - mortality
Breast Neoplasms - psychology
Breast Neoplasms - rehabilitation
Female
Health care delivery
Health education
Health Informatics
Health Promotion and Disease Prevention
Health Services Accessibility - statistics & numerical data
Health Services Needs and Demand - statistics & numerical data
Humans
Medicine
Medicine & Public Health
Middle Aged
Oncology
Patient Acceptance of Health Care - ethnology
Patient Acceptance of Health Care - statistics & numerical data
Patient Advocacy - psychology
Patient Advocacy - statistics & numerical data
Patient Care Planning - standards
Patient Care Planning - statistics & numerical data
Physician-Patient Relations
Primary Care Medicine
Public Health
Quality of Life Research
Survival Rate
Survivor
Survivors - psychology
Survivors - statistics & numerical data
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:Purpose African-American breast cancer survivors (AABCS) suffer the greatest from cancer recurrence, morbidity, and mortality in part due to the lack of cancer follow-up care and surveillance. To improve survival and survivorship, the Institute of Medicine advises that cancer survivors be provided a survivorship care plan (SCP). The current study investigated AABCS’ understanding of SCP and gathered preliminary feedback on infusing cultural and socioecological responsiveness. Methods The study embraced a community-based participatory research framework. Three facilitated, structured, consensus meetings were conducted with AABCS ( N  = 25) and advocates ( N  = 3) to provide information towards identifying the content domains of an SCP that are culturally responsive to AABCS. Results AABCS recommended inclusion of patient-centered information on the purpose and use of the SCP. They raised concerns that higher mortality in AABCS may be due to greater comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP document all comorbidities and medications, regardless of relationship to cancer; referrals for cancer-related providers; and culturally informed health advisories. Conclusion Study findings indicate that the available SCP template lacked adequate content on health history, comorbidity, health promotion, and functioning. These factors constitute the underlying clinical, psychosocial, and behavioral risks for poor disease outcomes that may be exacerbated in AABCS. Implications for Cancer Survivors SCPs are intended to educate and activate patients to join their oncology care team as informed partners. However, the emerging science and implementation of SCPs seem void of patient input. Our investigation suggests a practical approach for survivor engagement in the SCP discourse to increase their cultural responsiveness and patient-centeredness.
ISSN:1932-2259
1932-2267
DOI:10.1007/s11764-013-0270-1