The national standards for cancer survivorship care in action: caregiver experiences across stage, phase, and geography.

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.