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    題名: 血友病患照顧者之資訊行為研究 : 以患者母親為例
    其他題名: A study of information behaviors of the caregivers of haemophilia : a case study of mothers with patients
    作者: 吳柏諺;Wu, Bo-Yan
    貢獻者: 淡江大學資訊與圖書館學系碩士班
    宋雪芳
    關鍵詞: Caregivers;Hemophilia;Information Behaviors;Information Needs;Mothers;母親;血友病;照顧者;資訊行為;資訊需求
    日期: 2017
    上傳時間: 2018-08-03 14:55:30 (UTC+8)
    摘要: 在世界上有些罕見疾病是無藥可醫,或是僅能藉由藥物控制病情,而血友病(Hemophilia)正是僅能藉由藥物控制病況的罕見疾病之一。由於受到基因缺陷的影響,血友病患者先天就伴隨著血液凝血功能異常的問題,時常會因為出血影響患者行動或危及生命安全。血友病是藉由母親基因遺傳所致,疾病無法完全根治,因此患者終身都得與疾病共存,對於母親而言,是需要承擔相當龐大的壓力,且照顧的重擔往往都落在母親身上。在其他領域的研究中,有部分是探討血友病患者母親心理層面的議題,然而相關的文獻數量相當有限。因此本研究藉由了解血友病患照顧者之資訊行為,深入的探討照顧者於照顧過程中,會產生何種資訊需求、資訊來源、資訊使用與資訊分享等行為。
    本研究以半結構式訪談法蒐集資料,訪談對象為11位血友病患照顧者。研究結果發現,有血友病家族病史的照顧者,對於疾病遺傳的敏感度偏低,並不會事先對該疾病多做相關了解。在資訊需求方面,血友病患照顧者會展現出四個階段,分別為:尚未察覺孩子罹患病的階段、出現病況與確診疾病階段、接受治療與尋求照顧方法的階段、終身與疾病共存等四個階段。而在此四階段過程中會產生出相對應的資訊需求,包含了:時事資訊、育嬰資訊、疾病資訊、診斷資訊、治療資訊、預防出血與照顧資訊、藥物資訊、社會福利和未來生涯等九種資訊需求。
    血友病患照顧者資訊來源,主要仰賴血友病協會與病友以及病友親人,而這兩個管道為照顧者取得疾病資訊與照顧資訊的重要管道。整體而言,血友病患照顧者資訊來源包含以下六種:醫護人員、血友病協會、病友或病友親人、家族親人的經驗、網際網路與相關書籍。
    資訊使用部分最主要的目的為尋找更好的治療方法,並提早做相關預防減少突發狀況,以及患者出血時的反應時間。資訊使用可以讓照顧者了解該疾病的病況、治療與照顧的方法,因此資訊能有效減少照顧者自身壓力。而照顧者在使用資訊過程會藉由專業人士或尋求他人認同,來協助判斷資訊是否正確,然而有部分照顧者在判斷資訊過程,會以「賭」的心態來嘗試治療或照顧的方法,然而血友病伴隨著一些不確定因素,因此藉由賭的方法可能會錯過最佳的治療時機。
    最後血友病資訊分享內容以治療與照顧資訊為主,然而會呈現較為被動的方式分享,可能受限於分享的管道與對象有限,使得分享資訊時往往都是等到他人詢問才回答,而較常被其他照顧者問到的問題為,照顧時所注意的事項、怎麼帶孩子、孩子關節有沒有問題以及領藥和打針等問題。此外,較年長的照顧者在分享照顧經驗的過程,較容易帶出過去醫療環境與資訊不足的狀況,訴說著過去照顧的艱苦過程與現今的差異。
    本研究依據結果,提出相對應之建議:
    (1) 給血友病患照顧者建議:若是有家族病史女性,在結婚前先至醫院做相關檢查,能提前對疾病做事前的了解。另外,建議血友病患照顧者能多主動分享經驗,雖然每個小孩成長過程不同,但若能匯集許多照顧者經驗,勢必能找到可參考之處。
    (2) 給血友病協會的建議:可以嘗試舉辦以血友病照顧者為對象的活動,增加照顧者與照顧者之間互動的機會,或是收集各為血友病患照顧者之照顧經驗,將該照顧經驗製成書籍或照顧經驗的故事,以及開設臉書社團,提供病友或病友家屬有個線上的互動的空間,若顧及隱私則可將社團設定為不公開,以保有病友及家屬之間的隱私。
    (3) 給血友病中心建議:建議血友病中心嘗試使用雲端筆記本,讓照顧者能透過雲端筆記本直接線上發問,再讓醫護人員進行解答,長期下來必能累積龐大的資料庫。
    (4) 給未來研究之建議:可以罕見疾病、身心障礙者或照顧者為研究對象,替社會上較為弱勢的族群伸出援手;若研究以血友病患照顧者為探討對象,可以單一年齡層做更深入的探討,像是以年紀較為年長的血友病患照顧者,探討過去環境對於資訊行為的影響與限制,或從較年輕的照顧者探討網路世代的狀況與遭遇到的困難。另外,血友病屬於遺傳性疾病,但在本研究中並未發現有提到遺傳疾病資訊等議題,以及照顧者較為擔心患者為來生涯的議題,因此可從遺傳疾病資訊與未來生涯著手進行研究。
    There are rare diseases that can only be controlled by drugs, even can’t be cured with some treatments in the world. Hemophilia is one of the rare diseases which can only be controlled by drugs. Due to genetic disorder that impairs the body’s ability to make blood clots, congenital hemophilia patients have problems with moving or safety because of bleeding. The hemophilia patients are inherited from mother’s gene and can’t be completely healing in a whole life. For mother, she has a lot of pressure and responsibilities to take care of patients. In other research areas, the relevant literature about the psychological issues of mother with hemophilia patients are quite limited. As a result, this research discusses the caregivers’ information behavior of information needs, information sources, information use and information sharing when taking care of the patients.
    This study interviews with 11 hemophilia caregivers with a semi-structured method. The results of the study show that hemophilia caregivers have a low sensitivity for inherited genetic diseases and don''t try to know the information about the disease in advance. When it comes to information needs, the following are four stages:
    (1) No awareness of having the disease
    (2) Having symptoms and confirming the disease
    (3) Curing and searching ways to care
    (4) Having the disease in a whole life
    In the process of four stages mentioned above, there will be nine corresponding information needs, inclusive of current events information, child care information, disease information, diagnosis information, treatment information, preventing bleeding information, medicine information, Social Welfare and future career.
    Hemophilia patient caregivers get information from mainly hemophilia patients, hemophilia association as well as patients’ family. These are two important ways to get disease information and care information. On the whole, there are six hemophilia caregivers information sources, medical staff, hemophilia Association, patients or patients relatives, family experiences, Internet and related books included.
    The main purpose of using information is to find better treatments and preventions to reduce related emergencies, and patients’ reaction time of bleeding. Using information makes caregivers understand the diseases, treatments and the ways of looking after patients, which can reduce the self-pressure of caregivers. Caregivers need assurance from professionals or others to determine whether the information is correct or not.
    Some caregivers try to search the methods to treat and taking caring of the patients. However, using their imagination could miss the best cure timing because the hemophilia has some uncertain factors.
    Finally, the content of information sharing are hemophilia treatments and care information which are shared passively. The information aren’t shared until other people ask questions because it could be restricted by the way and object. Other caregivers often ask the notice of caring, “how to care a child”, “whether”, the problems of getting medicine and injections. Moreover, the older caregivers say the care different between now and past as well as the condition that information is insufficient clearly when sharing the process of care experiences.
    According to the results of the study, the following are some suggestions:
    (1) For caregivers with hemophilia patient, if there is a female who has a family history, she should go to the hospital for related examination before getting married. It can understand the disease in advance. In addition, hemophilia caregivers can share the experiences. Although every child has a different growing-up process, we still can collect many caregivers’ experiences to find references.
    (2) This study suggests the hemophilia association holds some related activities for caregivers to increase the opportunity of interaction between caregiver and caregiver. And, it can make the care experiences of caregivers of books or stories by collecting the care of the experiences. Also, it can create a facebook group to provide an interactive space for patients and patients’ family members. Due to the privacy, it can set a secret group.
    (3) This study suggests the Hemophilia Center tries to use the cloudnote for caregivers to ask questions directly and then medical staff answers questions. By collecting them, it will become a huge database for a long time.
    (4) The suggestions of future research can use rare diseases, the disabled or caregiver as the research subject to help vulnerable groups; the research subject as hemophilia caregivers can further discuss the single age group. For example, it can discuss the influence and limit of the older caregivers’ information behavior in the past, or the net generation condition and difficulties that younger caregivers face. Moreover, hemophilia is an inherited genetic disease, but this study did not mention that the inherited genetic disease information and patient’s career that caregivers are worried about. Therefore, the further study can start from inherited genetic disease information and future career.
    顯示於類別:[資訊與圖書館學系暨研究所] 學位論文

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