癌症病患家庭照護者之資訊行為研究

A Study of Information Behaviors of the Family Caregivers of Cancer Patients

陳世娟(Shih-Chuan Chen)

指導教授 ： 吳明德

共同指導教授 ： 唐牧群

國立臺灣大學/文學院/圖書資訊學研究所/博士(2012年)

https://doi.org/10.6342/NTU.2012.01736

摘要

2010年我國衛生署國人死亡原因統計，排名第一的是癌症，癌症多年來居於十大死因首位，癌症的高攀升率也早已受到世界的關注。癌症病患家庭照護者為了瞭解親人罹癌的病情，需要不同的資訊來照顧自己的親人，同時，家庭生活也面臨極大改變。國內外與病患健康醫療資訊行為相關的研究，大多集中在癌症病患本身或醫療專業人員，與癌症病患家庭照護者相關的研究較少，研究也發現家屬和照護者有更廣泛的資訊需求。因此，本研究以癌症病患家庭照護者為研究對象，探討其資訊行為，具體而言，本研究目的在於：一、分析癌症病患家庭照護者的資訊需求，二、分析癌症病患家庭照護者的資訊來源，三、探討癌症病患家庭照護者之資訊行為，四、建立癌症病患家庭照護者資訊行為模式。
本研究以深度訪談蒐集資料，訪談對象以病患從發病到就醫期間，經歷照顧經驗一年以上的15位家庭照護者，其中女性9人，男性6人。與病患的關係包括夫妻、母女、母子、父女、父子、兄弟、翁媳及祖孫。病患罹患癌症的類型包括乳癌、淋巴癌、胃癌等10種。本研究將歷程分成七個階段，分別是：預防、診斷、預後（手術後）、治療、復原、復發、臨終，探討癌症病患家庭照護者在癌症歷程中的資訊行為。
本研究歸納癌症病患家庭照護者的資訊需求類型為：癌症資訊、治療相關、照護相關、飲食相關、心理相關、健康資訊、保險相關、應對相關等八類。研究結果發現癌症病患家庭照護者在癌症歷程中會因為不同階段而有不同的資訊需求，其資訊需求類型會受到相關人口統計因素的影響。
本研究歸納癌症病患家庭照護者的資訊來源為：醫護人員、醫院、網路、人際網路、大眾媒體、一般圖書等六類，研究結果顯示癌症病患家庭照護者的資訊來源會隨著不同階段的資訊需求而有所不同，資訊來源類型也會受到相關人口統計因素的影響。另外，本研究發現癌症病患家庭照護者之資訊行為具有下列特性：資訊需求類型多元、資訊需求會因歷程而有改變、資訊需求有時間壓力、資訊需求的不可預期性高、資訊需求具不可避免性、資訊來源類型多元、對所需資訊相當陌生、選擇資訊重視權威性、選擇資訊重視來源的便利性、對資訊做雙重確認、資訊使用需多人參與及決定、與他人分享資訊。最後，本研究歸納影響癌症病患家庭照護者資訊行為的因素包括：人口統計變項、情境、心理面向、家庭角色、文化因素，並以相關理論為基礎，建立癌症病患家庭照護者資訊行為模式。
依據研究結果，本研究提出以下的建議：醫院在不同的階段可給予病患及家庭照護者癌症相關的資訊小冊子；資訊提供者（醫護人員）在傳達資訊給病患和家庭照護者時，儘可能將多數病患常遇到的狀況先予以說明，讓病患和家庭照護者有心理準備，另外我國政府單位或是醫院可一同建置癌症資訊網站，大眾媒體在處理健康相關資訊應該要更嚴格的把關；癌症家庭照護者多關心自己，在照顧病患的同時也要想想自身的需求；公共圖書館可定期舉辦健康相關講座，幫助民眾對對於不同類型的癌症及其照護方式有更多瞭解。
本研究囿於人力及時間，訪談人數有限，建議未來可與醫院配合，進行較大規模的調查研究，或採用俗民誌研究方法，更深入瞭解癌症病患家庭照護者的資訊行為。

關鍵字

癌症病患 ； 家庭照護者 ； 資訊行為 ； 資訊行為模式 ； 資訊來源 ； 資訊需求

並列摘要

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.

並列關鍵字

Cancer journey ； Cancer patients ； Family caregivers ； Information behavior ； Information behavior model ； Information needs ； Information sources

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