罕見疾病兒童與青少年之主要照護者資訊行為研究

因為美國的冰桶挑戰風潮與罕見疾病相關電影《一首搖滾上月球》，讓罕病家庭備受關注。罕病家庭的照護者所承受的壓力不但高於一般的身障家庭，而且能收集到的醫療照護資訊相當有限，若可以盡早得知有關罕見疾病治療方式的資訊，減緩罕病病友的病情，或許能防止許多憾事發生。本研究採用半結構式訪談法，訪問10位罕病兒童與青少年主要照護者為研究對象。研究結果發現，照護者在未得知病友罹患罕病前，照護者平常皆不會注意罕病資訊，診斷與確診初期會想先了解罕見疾病類型的介紹。在治療與復健階段，照護者會產生醫療照護、復健、防止惡化的資訊需求。終身與病為伍階段，照護者會面臨社會福利及病友生涯發展的資訊需求。照護者的資訊需求因教育程度與病友類型有所不同。主要照護資訊來源多以醫生與病友協會為主，因照護者年齡與病友的罕病類型讓主要照護來源有所不同。資訊使用行為方面，會利用所獲得的資訊做進一步的運用。以醫療專業權威、多重資訊來源、自行經驗三者擇其一作為辨識資訊正確性的依據，照護者的資訊使用行為會因為病友罕見疾病類型而有所不同。資訊分享行為，發現全部的照護者都非常樂於主動分享相關資訊，但會因為性別和病友的罕病類型讓照護者的資訊分享行為有所不同。對主要照護者建議可以將自己的經驗，主動分享於公共場合活動，讓民眾了解罕見疾病，教導民眾如何預防罕見疾病兒童的發生，成為資訊的提供者。對人數眾多之病友協會建議，可申請社群網站成立病友協會粉絲專頁，定期發佈相關疾病之背景知識、舉辦健康資訊講座，透過活動以及贈品吸引民眾參與，增加民眾對罕病病類的認識。未來研究建議能繼續以罕病病友之「就學（教育學習）」、「就業（促進就業）」、「就醫（醫療復健）」、「就養（生活照顧）」四個方向發展，心理層面則可針對病友不同年齡層做比對，罕病家庭的研究，可以往家庭經濟問題、家中其他非罕見病患手足與家屬心理調適問題、家庭工作型態改變問題、夫妻間面臨危機問題，與照護者因應壓力做探討。

關鍵字

罕見疾病；罕見疾病兒童；罕見疾病青少年；主要照護者；資訊行為

並列摘要

The topic of the research is derived from the Ice Bucket Challenge trend and a movie called, Rock Me To The Moon, which is related to rare diseases. Both the event and the movie inform the public about rare diseases. Rare disease caregivers are under more pressure than caregivers who treat general physically challenged problems. The medical care information caregivers collect is very limited. If they knew how to treat rare diseases earlier, their children’s condition could have been prevented before something regretful happened. The study uses a semi-structured interview from the qualitative research method. We interviewed 10 primary caregivers as subjects. These primary caregivers are parents of children with rare diseases. The results of the study indicated that if no one in their family suffers from rare diseases, primary caregivers do not focus on the rare disease information. Primary caregivers want to understand the fundamentals of rare diseases first as a diagnostics incipient step. After a patient’s outbreak of the rare disease, primary caregivers would want to find physiotherapy, to keep their disease at bay. They would want care information, which would help relieve their pain and discomfort of rare diseases. When they discover their child’s disease is incurable, primary caregivers need information about social welfare and their child’s future. Primary caregivers have different information needs because it depends on their education background and patient rare disease type. The main source of medical care information is provided by doctors and associations. The different sources of the information depends on primary caregivers’ age and patients’ disease type. In using the information behavior aspect, primary caregivers employ the information which they obtain and they either check the information they obtain with a professional authority, multiple sources, or compare it with patient experience to identify if the information is accurate or not. The information of using behavior is different because of a patient’s rare disease type. In sharing information behavior aspect, primary caregivers are glad to share what they find with other families that have children with a rare disease. The information of sharing behavior is different because it depends on primary caregivers gender. The suggestion to primary caregivers is that they can share their own experience with others in public places or during social activities. They should let people know about rare diseases and teach them how to prevent the rare disease from developing in their children. Primary caregivers also become the information provider. The suggestion to associations is that, they can establish Facebook fan pages and post rare disease information regularly or hold healthy information lectures. Social events can increase the number of people that know about rare disease types. Future research can develop through patients’ “education studies”, “employment promoting”, “medical and rehabilitation”, and discussing “life care” issues. Psychological research can help people of different age groups cope with their disease. In the future, people will want to discuss a variety of issues, such as family economic issues, siblings who do not have a rare disease and their mental accommodation issues, life style change issues, crises in married couples, and primary caregivers coping stress issues.

並列關鍵字

Rare Diseases ； Rare Diseases Children ； Rare Diseases Adolescents ； Primary Caregivers ； Information Behaviors

參考文獻

方凱企（2006）。發展遲緩兒童照護者壓力與其對遺傳諮詢資源獲取的需求研究（未出版之碩士論文）。國立臺灣大學分子醫學研究所，臺北市。

谷玲玲、張惠蓉（2002）。網路社群的人際互動：以玉山虛擬航空公司為例。新聞學研究，72，55-83。

卓玉聰、林千鈺（2004）。消費者健康資訊網路資源之探討。圖書資訊學刊，2（2），57-85。

林書羽（2009）。晚發型遺傳性神經退化疾病家族的心理調適及決策衝突（未出版之碩士論文）。國立臺灣大學分子醫學研究所，臺北市。

廖韋淳、邱立安、岳修平（2012）。鄉村地區老年人健康資訊需求與尋求行為之研究。圖書資訊學刊，10（1），155-204。

主題瀏覽