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Choi, Youn Seon Hwang, Sun Wook Hwang, In Cheol Lee, Yong Ju Kim, Young Sung Kim, Hyo Min Youn, Chang Ho Ahn, Hong Yup and Koh, Su-Jin 2016. Factors associated with quality of life among family caregivers of terminally ill cancer patients. Psycho-Oncology, Vol. 25, Issue. 2, p. 217.
DuBenske, Lori L. Mayer, Deborah K. and Gustafson, David H. 2016. Oncology Informatics.
Gregório, Hugo Santos, Patricia Pires, Isabel Prada, Justina and Queiroga, Felisbina Luísa 2016. Comparison of veterinary health services expectations and perceptions between oncologic pet owners, non-oncologic pet owners and veterinary staff using the SERVQUAL methodology. Veterinary World, Vol. 9, Issue. 11, p. 1275.
Hart, Joanna L. Pflug, Emily Madden, Vanessa and Halpern, Scott D. 2016. Thinking Forward: Future-oriented Thinking among Patients with Tobacco-associated Thoracic Diseases and Their Surrogates. American Journal of Respiratory and Critical Care Medicine, Vol. 193, Issue. 3, p. 321.
Longacre, Margaret L. Galloway, Thomas J. Parvanta, Claudia F. and Fang, Carolyn Y. 2015. Medical Communication-related Informational Need and Resource Preferences Among Family Caregivers for Head and Neck Cancer Patients. Journal of Cancer Education, Vol. 30, Issue. 4, p. 786.
Schook, Romane Milia Linssen, Cilia Schramel, Franz MNH Festen, Jan Lammers, Ernst Smit, Egbert F Postmus, Pieter E and Westerman, Marjan J 2014. Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study. Journal of Medical Internet Research, Vol. 16, Issue. 2, p. e37.
Sherman, Deborah W. McGuire, Deborah B. Free, David and Cheon, Joo Young 2014. A Pilot Study of the Experience of Family Caregivers of Patients With Advanced Pancreatic Cancer Using a Mixed Methods Approach. Journal of Pain and Symptom Management, Vol. 48, Issue. 3, p. 385.
Chih, Ming-Yuan DuBenske, Lori L Hawkins, Robert P Brown, Roger L Dinauer, Susan K Cleary, James F and Gustafson, David H 2013. Communicating advanced cancer patients’ symptoms via the Internet: A pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood. Palliative Medicine, Vol. 27, Issue. 6, p. 533.
Ferrell, Betty Hanson, Jo and Grant, Marcia 2013. An overview and evaluation of the oncology family caregiver project: improving quality of life and quality of care for oncology family caregivers. Psycho-Oncology, Vol. 22, Issue. 7, p. 1645.
Niu, Z. -M. Wang, Y. -S. Li, Y. Peng, X. -Y. Cui, X. -Y. Wu, Y. -K. and Liang, C. -S. 2013. More negative emotion and symptom burden for female cancer patients. Psycho-Oncologie, Vol. 7, Issue. 3, p. 175.
Williams, Anna-leila Tisch, Alison J. Holmes Dixon, Jane and McCorkle, Ruth 2013. Factors associated with depressive symptoms in cancer family caregivers of patients receiving chemotherapy. Supportive Care in Cancer, Vol. 21, Issue. 9, p. 2387.
Carey, Mariko L. Clinton-McHarg, Tara Sanson-Fisher, Robert William and Shakeshaft, Anthony 2012. Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer. Supportive Care in Cancer, Vol. 20, Issue. 5, p. 991.
Namkoong, Kang DuBenske, Lori L. Shaw, Bret R. Gustafson, David H. Hawkins, Robert P. Shah, Dhavan V. McTavish, Fiona M. and Cleary, James F. 2012. Creating a Bond Between Caregivers Online: Effect on Caregivers’ Coping Strategies. Journal of Health Communication, Vol. 17, Issue. 2, p. 125.
Wittenberg-Lyles, Elaine Demiris, George Parker Oliver, Debra Washington, Karla Burt, Stephanie and Shaunfield, Sara 2012. Stress Variances Among Informal Hospice Caregivers. Qualitative Health Research, Vol. 22, Issue. 8, p. 1114.
Friðriksdóttir, Nanna Sævarsdóttir, Þórunn Halfdánardóttir, Svandís Íris Jónsdóttir, Arndís Magnúsdóttir, Hrefna Ólafsdóttir, Kristín Lára Guðmundsdóttir, Guðbjörg and Gunnarsdóttir, Sigríður 2011. Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression. Acta Oncologica, Vol. 50, Issue. 2, p. 252.
Girgis, Afaf Lambert, Sylvie and Lecathelinais, Christophe 2011. The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation. Psycho-Oncology, Vol. 20, Issue. 4, p. 387.
Johnson, Kimberly Isham, Andrew Shah, Dhavan V. and Gustafson, David H. 2011. Potential Roles for New Communication Technologies in Treatment of Addiction. Current Psychiatry Reports, Vol. 13, Issue. 5, p. 390.
DuBenske, Lori L. Chih, Ming-Yuan Gustafson, David H. Dinauer, Susan and Cleary, James F. 2010. Caregivers’ participation in the oncology clinic visit mediates the relationship between their information competence and their need fulfillment and clinic visit satisfaction. Patient Education and Counseling, Vol. 81, p. S94.
Hersh, William R. Street, Richard L. DuBenske, Lori L. Gustafson, David H. Shaw, Bret R. and Cleary, James F. 2010. Web-Based Cancer Communication and Decision Making Systems: Connecting Patients, Caregivers, and Clinicians for Improved Health Outcomes. Medical Decision Making, Vol. 30, Issue. 6, p. 732.
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 morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory.
One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey.
Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement.
Although the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course.
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