照護家中長期重度腦性麻痺兒的母親之壓力源及因應行為

Please use this identifier to cite or link to this item: https://dyhuir.dyhu.edu.tw/ir/handle/987654321/287

Title:	照護家中長期重度腦性麻痺兒的母親之壓力源及因應行為
Authors:	趙明玲
Keywords:	腦性麻痺;母親;壓力源;因應行為;質性研究法;Cerebral palsy;Mother;Stressor;Coping behavior;Coping behavior;Qualitative method
Date:	2002/09
Issue Date:	2011-08-17T08:06:21Z
Abstract:	腦性麻痺在台灣地區之發生率約為人口總數的千分之五到六之間(黃，1998)，家有腦性麻痺兒，對母親及整個家庭而言，除帶來很大的衝擊外，更是一項很大的壓力源。本研究目的在探討照護家中長期重度腦性麻痺兒的母親之壓力源及因應行為，採立意取樣，以質性研究法共收集十位個案，依訪談大綱作面對面作開放式訪談，將資料寫成行為過程記錄。訪談內容以錄音記錄，依Miles和Huberman(1994)質性研究分析法分析資料。內容整理後發現：每位母親都能了解小孩是罹患何種疾病，但是對於疾病的發生原因，以及疾病未來發展的過程皆不了解，也發現母親會四處求醫，採取西醫、中醫或民俗醫混合式的治療措施，只希望病兒的病能治好。母親出現與期望不符合的失落感受、憂傷、震驚、否認及不相信、調整性情緒感受、希望正常化等情緒反應，而以合理化、認命、淡化及降低期望等心理自衛機轉以轉化期望或解釋情況的方式來讓自己可以接受事實以調整情緒，建立正面的自我觀念。而對學齡前期及學齡期的病兒，母親會去預期未來就業所遇到的困難。因此病兒大部份朝靜態發展，最多為學習電腦，成為一技之長。研究中大部份母親指出在病兒初期會經歷到無人主動提供統整的社會資源，如醫療補助、醫療及照顧訊息、特殊用具與教育訊息，而導致增加照顧上的困難，希望能由社會局主動提供完整訊息。並提出是否可由政府來成立一個專責的教養機構，或臨托，或是到家裡做日托嬰的專門收容這種小孩的教養機構。另有多位母親提到學校老師對病兒的態度亦是教育上的一個大課題，學校衛生護士如何發揮專業知識及技能，將學校病兒收案管理及帶領病兒對自己有較為正面及正確的看法外，更可經由教育宣導方式，促進全體師生對病兒之態度能有較正確之觀念，亦是值得努力的方向。我國是強調家庭觀念的社會，家中病童的生長發育與家庭是息息相關的，社區護理人員係以家庭為服務的基本單位，社區護理人員角色也逐漸由醫院擴散至社區，提供持續性的照護與諮詢，故除協助病童走向康復之路，亦應重視這群母親。對母親的痛苦、困難與需要進行瞭解，幫助他們解決問題，滿足其需要，提供最適切的健康服務。本研究結果因由當事人提供豐富及深入的生活經驗、需要，以及所採行的因應行為，故可作為提供照護母親之預防性及治療性之護理實用性知識。 In Taiwan, the cerebral palsy occurs 5-6 in 1000 live birth. Most mothers had suffered giant impacts and became the source of pressure from time to time. This was an exploratory study. It was initially explor the stressors and coping behaviors of mothers with caring child receiving serious cerebral palsy. Ten mothers who were taking caring their child with serious chronic illness participated. This study was conducted by a qualitative method and purposive sampling. Data were collected through face to face interviews following the semi-structured interviewed guide. The method of inductive data analysis used was the method described by Miles and Hurberman(1994) to identify themes and categories. The study showed as following:(1)the perception of illness: mothers realized what kind of disease the child suffered, but they couldn't understand the causes of disease and further development. The results also showed mothers' adopted medical and folk treatments. (2)mothers' emotional: loss of unexpected, sad, shock, denial, unbelievable, adjusted emotion, hoping normalization. In addition, they used the methods of rationalization, accepted theirs fate, looked at it nonchalantly, lowered expectations in order to accept the facts. Mothers would prearrange learning computer for a single skill. Most mothers' pointed out that no one told them how to catch the completely information, such as medical subsidy, medical and caring information, special appliances and educational messages, resulting in increase caring difficulty. They hoped the government of Social Bureau could supply information. They also hoped the government could establish a special raising department, or daycare, or respite. Mothers indicated educational problems. It's important that we should teach school teachers treating such children in positive attitudes, and the school nurse should apply the professional knowledge to assist these cp children. These results provide informative knowledge intrinsic to the mother' perceptions in caring their chronic illness child. We suggest that by equipping the public health nurses with such information will improve the quality of home caring for these sick child and provide a better supports for mothers.
Relation:	德育學報第十八期:081-092
Appears in Collections:	[Journal of Deh Yu] Journal of Deh Yu 18

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