Needs of familial caregivers of cancer patients across the advanced cancer disease trajectory.

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Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers' needs is vital in providing necessary support to lessen caregiver burden and comorbidity. This study examines particular information needs across a variety of specific events in the advanced cancer disease trajectory. A cross-sectional sample of 107 familial caregivers (24 current and 83 bereaved) of people with advanced cancer completed a needs assessment survey along with a measure of health information-seeking behavior. Analyses extend current research by including more specific disease-related events along the advanced cancer trajectory through bereavement. In all information categories, endorsement of ... continued below

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Bernard, Lori Lynn August 2004.

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  • Bernard, Lori Lynn

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Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers' needs is vital in providing necessary support to lessen caregiver burden and comorbidity. This study examines particular information needs across a variety of specific events in the advanced cancer disease trajectory. A cross-sectional sample of 107 familial caregivers (24 current and 83 bereaved) of people with advanced cancer completed a needs assessment survey along with a measure of health information-seeking behavior. Analyses extend current research by including more specific disease-related events along the advanced cancer trajectory through bereavement. In all information categories, endorsement of wanted information differed across broad stages of Cancer Progression, Treatment, End of Life, and Post-Patient Death. For all information categories, except Dying and Spirituality, greatest information was wanted at the Cancer Progression stage. Information need also differed across specific events within broad stages. The categories of Disease/Medical and Relating to the Patient were the most endorsed at events involving patient care. Spirituality was least endorsed. At patient death, Caregiver Well-being has the highest endorsement. For events thereafter, information on Caregiver Well-being, Spirituality, Future Outlook, and Family and Close Others was most endorsed. Information needs did not differ based on age or education. Whether or not a caregiver had experienced a given event on the cancer trajectory impacted some categories of information desired at the events of leaving the hospital for home, going into hospice, patient death, immediately after death, and bereavement. In all cases, those who had experienced the event wanted more information. In comparing current to bereaved caregivers, no differences in information endorsement occurred for events of the Cancer progression or Treatment stages. This study also involved the validation and factor analysis the Health Information-Seeking Behavior Survey. Two factors, Health Information-Seeking and Health Information-Avoiding, emerged. Health Information-Seeking correlates positively with some of the information categories at some of the stages. Increased understanding of caregiver needs at specific key events in the advanced cancer illness trajectory can now be used to inform the development of effective familial caregiver education interventions.

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  • August 2004

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  • Feb. 15, 2008, 3:29 p.m.

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  • Jan. 16, 2014, 2:06 p.m.

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Bernard, Lori Lynn. Needs of familial caregivers of cancer patients across the advanced cancer disease trajectory., dissertation, August 2004; Denton, Texas. (digital.library.unt.edu/ark:/67531/metadc4637/: accessed February 28, 2017), University of North Texas Libraries, Digital Library, digital.library.unt.edu; .