title: Medical Communication-related Informational Need and Resource Preferences Among Family Caregivers for Head and Neck Cancer Patients.
abstract: Despite advances in treatment, head and neck cancer (HNC) patients often experience considerable functional impairment during and following treatment. As a result, family caregivers are essential in a patient's recovery; however, few caregivers are well-prepared to handle the extensive caregiving needs of this patient population. To date, little is known about HNC caregivers' informational needs in this role. Thus, we surveyed a sample of HNC caregivers about their informational needs including those related to interacting in the medical context as a caregiver and meeting patient needs. We also asked these caregivers their preferences for obtaining caregiving information. We conducted a cross-sectional study of 59 family caregivers for HNC patients who had completed radiation therapy at a comprehensive cancer center. The majority of caregivers (74.6%) reported having high informational need at diagnosis related to interacting as a caregiver. Although the need for such information decreased over time, over half still had a high need for information at treatment end. Importantly, caregivers who desired information about reducing patient pain and distress also reported having greater informational needs on issues related to interacting in the medical context. Further, the caregivers most often preferred to receive information from health-care professionals as a first source. However, preferring an informal (e.g., Internet) resource at first was significantly associated with needing information on how to talk to a doctor or nurse. The development of evidence-based resources and tools for HNC caregivers as well as clinicians may help caregivers more effectively manage patient symptoms and warrants further attention. Further, Internet resources may represent an effective resource for providing caregivers with strategies toward enhancing communication with healthcare professionals.
authors.affiliation: Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA. Margaret@cancersupportcommunity.org.
authors.forename: Margaret L
authors.initials: ML
authors.lastname: Longacre
authors.affiliation: Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA.
authors.forename: Thomas J
authors.initials: TJ
authors.lastname: Galloway
authors.affiliation: University of the Sciences, 600 South 43rd Street, Philadelphia, PA, 19104-4495, USA.
authors.forename: Claudia F
authors.initials: CF
authors.lastname: Parvanta
authors.affiliation: Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA.
authors.forename: Carolyn Y
authors.initials: CY
authors.lastname: Fang
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000193:education* / Q000523:psychology*; D003142:Communication; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006258:Head and Neck Neoplasms / Q000517:prevention & control*; D006295:Health Resources; D006301:Health Services Needs and Demand; D006801:Humans; D033181:Information Dissemination; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D013315:Stress, Psychological
keywords: Caregiving; Head and neck cancer; Information seeking