The national standards for cancer survivorship care in action: caregiver experiences across stage, phase, and geography
- 1Markey Cancer Center, University of Kentucky, Lexington, KY USA
- 2Department of Psychology, College of Arts and Sciences, University of Kentucky, Lexington, KY USA
- 3Department of Behavioral Science, College of Medicine, University of Kentucky, Lexington, KY USA
Abstract
Purpose: Caregivers play a central role in supporting cancer survivors across the care continuum, often at detriment to their own well-being. Recognizing caregivers’ role in survivorship, the National Standards for Cancer Survivorship Care state the health system should assess “caregivers’ experiences and unmet needs.” This study sought to describe the extent to which this standard is being met from the perspective of caregivers.
Methods: This cross-sectional, convergent mixed-methods study leveraged survey and semi-structured interview data from caregivers of survivors in active and post-treatment survivorship care at a southeastern U.S. cancer center. Surveys queried caregivers’ concerns and their experience being asked about and communicating various concerns; interviews further characterized these experiences, including barriers and facilitators to accessing services. Survey data were analyzed descriptively (and by various subgroups), and interview data were examined using directed content analysis.
Results: For the 77 caregivers surveyed (64.94% female; 96.10% non-Hispanic White; M average caregiving/week = 36 h), emotional concerns were most reported (66%), yet ≥ 50% of caregivers reported never being asked about these issues by the care team. Rural caregivers were less likely than non-rural caregivers to report the care team had inquired about their social and medical caregiving concerns. Interview data highlighted limited assessment of caregiver needs, logistical and communication barriers, and desire for proactive, tailored supportive services.
Conclusions: Practice gaps in assessing and addressing caregivers’ emotional, social, and physical health needs must be overcome to meet the caregiver standard, particularly if assessment is to be comprehensive in scope to mirror survivor assessment standards.
Implications for Cancer Survivors: Cancer care should implement routine, comprehensive structured assessment and referral pathways to meet caregiver needs.
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1007/s11764-026-02124-z.
Related
- Supporting implementation of the national standards for cancer survivorship care: development of the cancer survivorship maturity model (CSMM)
- Financial concerns: a critical gap in survivors’ experience of the implementation of the national standards for cancer survivorship care
- Contextual assessment of perceived health system alignment with National Standards for Cancer Survivorship Care in the American Southeast
- Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities
- Development of consensus-based standards for a National Clinical Audit of Perioperative Care: protocol for a modified Delphi consensus study.
BibTeX
@article{feather2026national,
title = {{The national standards for cancer survivorship care in action: caregiver experiences across stage, phase, and geography}},
author = {Abigayle R. Feather and Marguerite A. Webster and Marjorie L. Stanek and Lynn J. Andreae and Sandi Back-Haddix and Courtney Blair and Jessica L. Burris and Laurie E. McLouth},
journal = {Journal of Cancer Survivorship},
year = {2026},
month = sep,
doi = {10.1007/s11764-026-02124-z},
url = {https://doi.org/10.1007/s11764-026-02124-z},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - The national standards for cancer survivorship care in action: caregiver experiences across stage, phase, and geography
AU - Abigayle R. Feather
AU - Marguerite A. Webster
AU - Marjorie L. Stanek
AU - Lynn J. Andreae
AU - Sandi Back-Haddix
AU - Courtney Blair
AU - Jessica L. Burris
AU - Laurie E. McLouth
PY - 2026
DA - 2026/09/18
JO - Journal of Cancer Survivorship
DO - 10.1007/s11764-026-02124-z
UR - https://doi.org/10.1007/s11764-026-02124-z
AB - Purpose: Caregivers play a central role in supporting cancer survivors across the care continuum, often at detriment to their own well-being. Recognizing caregivers’ role in survivorship, the National Standards for Cancer Survivorship Care state the health system should assess “caregivers’ experiences and unmet needs.” This study sought to describe the extent to which this standard is being met from the perspective of caregivers. Methods: This cross-sectional, convergent mixed-methods study leveraged survey and semi-structured interview data from caregivers of survivors in active and post-treatment survivorship care at a southeastern U.S. cancer center. Surveys queried caregivers’ concerns and their experience being asked about and communicating various concerns; interviews further characterized these experiences, including barriers and facilitators to accessing services. Survey data were analyzed descriptively (and by various subgroups), and interview data were examined using directed content analysis. Results: For the 77 caregivers surveyed (64.94% female; 96.10% non-Hispanic White; M average caregiving/week = 36 h), emotional concerns were most reported (66%), yet ≥ 50% of caregivers reported never being asked about these issues by the care team. Rural caregivers were less likely than non-rural caregivers to report the care team had inquired about their social and medical caregiving concerns. Interview data highlighted limited assessment of caregiver needs, logistical and communication barriers, and desire for proactive, tailored supportive services. Conclusions: Practice gaps in assessing and addressing caregivers’ emotional, social, and physical health needs must be overcome to meet the caregiver standard, particularly if assessment is to be comprehensive in scope to mirror survivor assessment standards. Implications for Cancer Survivors: Cancer care should implement routine, comprehensive structured assessment and referral pathways to meet caregiver needs. Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1007/s11764-026-02124-z.
SN - 1932-2259
SN - 1932-2267
ER -