A Study of Information Behaviors of the Family Caregivers of Cancer Patients
Date Issued
2012
Date
2012
Author(s)
Chen, Shih-Chuan
Abstract
According to the Taiwan Department of Health, cancer was the leading cause of death in 2010, and has ranked first on the list of the top 10 causes of death for several years. The rate at which the number of people with cancer is increasing has also received worldwide attention. Families with cancer patients encounter changes in every aspect of their lives, and family caregivers of cancer patients are in demand of a wide variety of information to better understand the conditions of and provide better care for cancer patients. Domestic and international research conducted on the health and medical information behaviors of patients have focused primarily on cancer patients or medical staff, with few dedicated to family caregivers of cancer patients. Certain studies, however, suggest that family members and caregivers exhibit a broader demand for information. Therefore, this study selected family caregivers of cancer patients as the study subjects to explore their information behaviors. This study 1) analyzes the information needs of family caregivers of cancer patients, 2) analyzes the information sources of family caregivers of cancer patients, 3) investigates the information behaviors of family caregivers of cancer patients, and 4) establishes a model of information behaviors for family caregivers of cancer patients.
The study was conducted using in-depth interviews of 15 family caregivers with over 1 year of care experience with cancer patients from outbreak to treatment. Nine of the caregivers were women and six were men. The relationships between the caregivers and their patients included 1) husband and wife, 2) mother and daughter, 3) mother and son, 4) father and daughter, 5) father and son, 6) brothers, 7) father-in-law and daughter-in-law, and 8) grandparent and grandson. In total, 10 types of cancer were observed in the patients, such as breast cancer, lymphoma, and gastric cancer. To investigate the information behaviors of family caregivers of cancer patients, the cancer journey was divided into 7 periods in this study: prevention, diagnosis, prognosis (post-surgery), treatment, rehabilitation, recurrence, and terminal.
The study identified 8 types of information needs among family caregivers of cancer patients: cancer-specific information, treatment-related information, home care information, diet information, psychological support information, health information, insurance information, and coping information. The information needs of family caregivers of cancer patients vary at different periods throughout the cancer journey, and the types of information needs are subject to demographics.
This study identified 6 types of information sources used by family caregivers of cancer patients: medical staff, hospitals, the Internet, interpersonal network, mass media, and books. The information sources used by family caregivers of cancer patients vary at different periods throughout the cancer journey, and the types of information sources are also subject to demographics. Information behaviors of family caregivers of cancer patients are characterized by the following: 1) the types of information needs are diversified, 2) information needs differ at various periods throughout the cancer journey, 3) information needs are urgent, 4) information needs are highly unforeseeable, 5) information needs are unavoidable, 6) the types of information sources are diversified , 7) caregivers are unfamiliar with the information they seek, 8) authority of the information is important when caregivers select information, 9) accessibility of the information source is important when caregivers select information, 10) caregivers tend to double check the information obtained, 11) the use of information requires participation of and is determined by many people, and 12) caregivers tend to share the information with others. Finally, the study identified factors that influence the information behaviors of family caregivers of cancer patients: demographics, source characteristics, context, psychological variable, family role, and cultural variable. Based on these characteristics, this study establishes a model of information behaviors for family caregivers of cancer patients using relevant theories.
This study proposes the following suggestions based on the results. First, hospitals may provide cancer patients and family caregivers with brochures according to the appropriate disease period of the patient. When offering information, information providers (medical staff) should try to inform brochure recipients of the situations commonly encountered by families with cancer patients to increase their level of preparedness and government authorities and hospitals could jointly set up a Web site providing cancer-specific information. The mass media should also play a stricter gate- keeper role when dealing with health related information. Family caregivers of cancer patients should redirect a certain degree of attention back to themselves and not overlook their own lives and needs. Meanwhile, public libraries could hold routine health seminars on different types of cancer to help the public better understand cancer and patient care.
Because of manpower and time constraints, the number of participants recruited for interview was limited in this study. We suggest that future studies work with hospitals for larger-scale investigations or adopt ethnographic methods to enhance understanding on information behaviors of family caregivers of cancer patients.
Subjects
Cancer journey
Cancer patients
Family caregivers
Information behavior
Information behavior model
Information needs
Information sources
SDGs
Type
thesis
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