Evolving Information Priorities of Hematologic Cancer Survivors, Caregivers, and Other Relatives

Little is known about information priorities of people touched by hematologic cancers. We interviewed and surveyed 29 survivors/patients, 13 caregivers, and 19 non-caregiver relatives. Qualitative interviews indicated limited information describing topics other than specific cancer subtypes and trea...

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Bibliographic Details
Published in:Journal of cancer education 2010-09, Vol.25 (3), p.302-311
Main Authors: Gansler, Ted, Kepner, James, Willacy, Erika, Soloe, Cindy, Rupert, Douglas, Jarblum, Meredith, Driscoll, David, Orr, Alex, Fitzgerald, Tania, Esparza, Angelina
Format: Article
Language:English
Subjects:
Adult
Attitude of Health Personnel
Attitude to Health
Audiences
Biomedical and Life Sciences
Biomedicine
Blood diseases
Cancer
Cancer Research
Caregivers
Caregivers - education
Consumer Health Information - trends
Coping
Families & family life
Family
Health education
Health Priorities
Health Resources
Humans
Information Needs
Leukemia - psychology
Lymphoma - psychology
Maintenance
Middle Aged
Needs Assessment
Patients
Pharmacology/Toxicology
Recruitment
Survivor
Survivors
Young Adult
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Summary:Little is known about information priorities of people touched by hematologic cancers. We interviewed and surveyed 29 survivors/patients, 13 caregivers, and 19 non-caregiver relatives. Qualitative interviews indicated limited information describing topics other than specific cancer subtypes and treatment options. The survey exercise revealed the following priorities: at diagnosis, cancer types and treatment options; during initial treatment, treatment options and coping with side effects; after treatment, follow-up tests and long-term side effects; at remission/during maintenance treatment at relapse, treatment options and follow-up tests; for patients, cancer types and treatment options; for caregivers, future outlook and support; for non-caregivers, finances. Information priorities vary by role and over time.
ISSN:0885-8195
1543-0154
DOI:10.1007/s13187-009-0034-9