Barriers to Hospice and Palliative Care for Adolescent and Young Adult Cancer Patients

Qualitative interview transcripts from 28 bereaved caregivers of adolescents and young adults (AYAs) with cancer who died between 2013 and 2016. The data was collected by researchers from Harvard University Press and focuses on barriers to optimal end-of-life care. Interviews were conducted with caregivers from three U.S. university medical sites.

Use Cases

• Analyzing themes of delayed prognosis communication based on caregiver interview narratives.
• Studying barriers to concurrent life-prolonging and palliative therapies based on described care delivery models.
• Investigating emotional support needs for patients and caregivers based on qualitative interview content.
• Identifying factors influencing hospice utilization rates among Medicaid-insured patients based on study demographics.

Strengths

• Includes data from 28 in-depth qualitative interviews with bereaved caregivers.
• Provides specific demographic statistics: 46% of AYAs were on Medicaid/public insurance, 61% used hospice, 46% used palliative care.
• Focuses on a specific, understudied population: adolescents and young adults (aged 15-39) with cancer.

Limitations

• Row count and column-level documentation are unknown, which may limit suitability assessment.
• Data may reflect geographic bias inherent to the three U.S. university sites where treatment was received.
• Last update date is unknown; freshness unverified.

Provenance

Source

Harvard University Press

Collection Method

Qualitative interviews conducted with bereaved caregivers, followed by content analysis.

Time Range

Patients died between 2013 and 2016.

Geography

Patients received treatment at the University of Alabama at Birmingham, University of Iowa, or University of California San Diego.