腦中風病患家庭照顧者急性加護期至出院後三個月的需求及其相關因素

Abstract

依據行政院衛生署的統計資料顯示，腦血管疾病是2009年十大死因中的第三位，而腦中風病患因身體的活動障礙如肢體的偏癱，或溝通障礙如失語症等必需經歷身體復健的時期，除了在急性期需要住院治療外，後續的照顧會延續到居家時期，因此也會造成照顧者的負荷。本研究目的在探討腦中風病患從住院期間到出院返家後三個月內不同時期家屬需求之變化及其相關因素，將分成四個階段：轉出加護病房前、出院前、出院後兩週及出院後三個月，追蹤家屬的照顧需求情形，本研究之研究設計為縱貫性研究，以臺北市某醫學中心腦中風加護病房病患的家屬為研究對象，採立意取樣，進行結構式問卷調查，研究工具包括照顧者負荷量表、中國人健康問卷（Chinese Health Questionnaire, CHQ-12）及腦中風病患家屬需求量表，自民國96年1月至99年1月期間共收集60位個案的完整資料進行統計分析。研究結果發現腦中風病患家屬有照顧需求項數方面，整體需求項數 (F=187.03，p=0.00) 或各次層面需求項數在不同的階段都有顯著差異；在照顧需求未滿足方面，整體需求項數 (F=140.12，p=0.00) 或各次層面需求項數在不同的階段都有顯著差異，表示以轉出加護病房前家屬的照顧需求項數最多，出院後三個月的需求項數最少，因此家屬的照顧需求項數隨返家時間增加而減少。各階段家屬照顧需求結果如下： 一、轉出加護病房前： 家屬最需要的照顧需求是健康訊息及專業支持層面，最需要的項目為疾病相關照顧訊息、醫護人員誠實回答問題及復健相關訊息；而最多家屬尚未滿足的照顧需求也是健康訊息及專業支持層面，最多家屬尚未滿足的需求項目為復健相關訊息、思考方面的完整訊息及緊急狀況的處理。 二、出院前： 家屬最需要的照顧需求是專業支持及健康訊息層面，最需要項目為疾病相關照顧訊息、身體方面的訊息及如何處理病患緊急狀況；最多家屬尚未滿足的照顧需求層面是專業支持及實質上支持層面的需求，最多家屬尚未滿足的需求項目為 復健相關訊息、居家照護訊息及有時間關心自己的需求。 三、出院後兩週： 家屬最需要的照顧需求是社區支持層面及專業支持層面，最需要的項目為緊急狀況處理、身體方面的訊息、醫療照護的訊息；最多家屬尚未滿足的照顧需求層面為專業支持及實質上支持層面的需求，在這個階段家屬照護需求未滿足的項數已明顯少於前兩階段，最多家屬尚未滿足的照顧需求項目是復健計畫及當病患行為怪異時應該做什麼。 四、出院後三個月： 家屬最需要的照顧需求是社區支持層面及專業支持層面，最多家屬有照顧需求的項目是病患緊急狀況處理、知道在病患行為怪異時該做什麼及病患身體方面的訊息；最多家屬尚未滿足的照顧需求層面為社區支持及情緒支持層面的需求，此階段有照顧需求但尚未滿足的項目明顯減少，尚未滿足的需求項目主要是需要有人協助並給予情緒支持、居家照護及復健相關訊息。 病患入院時以美國國家衛生研究院腦中風評估量表 (National Institutes of Health Stroke Scale, NIHSS) 評估病患中風的嚴重度，病患第一次入院時的NIHSS分數越高、住院天數越長、住院時合併症越多及身體依賴程度越高時，家屬的照顧需求越高；家屬自覺健康狀況越差及負荷程度越高時，家屬的照顧需求也會增加。藉由本研究發現，住院期間家屬的照顧需求多為疾病相關訊息及專業人員的照顧，但其自覺健康狀況、焦慮憂鬱情形及負荷程度也需要被重視，臨床護理人員應完整評估家屬的照顧需求，並提供個別化的指導及製作個別的單張或光碟，並可成立病友及家屬成長團體，共同分享照顧經驗，給予社會心理層面的支持，利用出院準備服務時，瞭解家屬在居家階段可能面臨的照顧需求，並提供相關訊息及家屬諮詢的管道，以隨時諮詢相關照護訊息及提供社會心理方面的支持。

Statistical data from Department of Health, Executive Yuan show that cerebral vascular disease (CVA) was the third leading cause of death in 2009 in Taiwan. After stroke, patients suffered different degree of disabilities in physical such as hemiplegia or communication such as aphasia. Besides the in-patient treatment in the acute stage, care should be extended to home. Thus burdens were resulted on family caregivers. This study was aimed at investigating the changes of family caregivers’ needs and related factors in different stages from the hospitalized period to the three months after the stroke patients were discharged. The family’s needs were studied through the following four stages: before the transfer from intensive care unit (ICU) to general ward, before discharged, two weeks after discharged, and three months after discharged to follow up the needs of family caregivers. The design of this study was based on longitudinal research, and the participants were family caregivers of stroke patients in the ICU of a medical center in Taipei. During Jan. 2006 to Jan. 2009, sixty family caregivers were recruited in this study. Structural questionnaires, including Caregiver Burden Scale, Chinese Health Questionnaire (CHQ-12) and Stroke Patient’s Family Caregiver Needs Scale were used for data collection. It was found that there was significant difference in different stages for numbers of care needs of the family caregivers in total scales (F=187.03, p=0.00) as well as care needs of the family caregivers subdimensions. On the aspect of unmet care needs of the family caregivers, there was a significant difference in different stages for numbers of unmet care needs in total scale (F=140.12, p=0.00) as well as care need subdimensions. The result indicated that throughout the four stages, there were most care need items of the family caregivers before the transfer from ICU to general ward, while there were least care need items on three months after the patients were discharged. Thus the numbers of family caregivers’ care need items decreased gradually as the time after the patients discharged from the hospital increased. Care needs of the family caregivers in four different stages were followed. First stage: Before the transfer from ICU to general ward The major care need subdimensions of the family caregivers were health information and professional support. The most care need items of the family caregivers were “To have information on patients’ disease and care”, “To have my questions answered honestly” and “To have information on patients’ rehabilitation or educational progress”. Meanwhile, the most unmet care need subdimensions of the family caregivers were also health information and professional support. The most unmet care need items of the family caregivers of the family caregivers were “To have information on patients’ rehabilitation or educational progress”, ”To have complete information on patients’ thinking” and “To be told how to deal with emergency events of patients”. Second stage: Before discharged The major care need subdimensions of the family caregivers were professional support and health information. The most care need items of the family caregivers were “To have information on patients’ disease and care”, ”To have complete information on patients’ physical problems” and “To be told how to deal with emergency events of patients”. The most unmet care need subdimensions of the family caregivers were professional support and instrumental support. The most unmet care need items of the family caregivers were “To have information on patients’ rehabilitation or educational progress”, “To have information on patients’ homecare” and “To get a break from my problems and responsibilities”. Third stage: Two weeks after discharged The major care need subdimensions of the family caregivers were community support network and professional support. The most care need items of the family caregivers were “To be told how to deal with emergency events of patients”, “To have complete information on patients’ physical problems” and “To have complete information on drug and treatment”. The most unmet care need subdimentions of the family caregivers were professional support and instrumental support. In this stage, the most unmet care need items of the family caregivers were significantly less than the previous two in-patient stages, which were “To have enough resources for the patient e.g. rehabilitation programs, physical therapy” and ”To be shown what to do when the patients is upset or acting strange”. Fourth stage: Three months after discharged The major care need subdimensioms of the family caregivers community support network and professional support, the most care need items of the family caregivers were “To be told how to deal with emergency events of patients”, ”To be shown what to do when the patients is upset or acting strange” and ”To have complete information on patients’ physical problems”. The most unmet care need subdimensions of the family caregivers were community support network and emotional support. During this stage, the unmet care need items of the family caregivers were significantly decreased. The main unmet care need items of the family caregivers were “To discuss my feelings about the patient with other friends or family”, “To have information on patients’ homecare” and “To have information on patients’ rehabilitation or educational progress”. When the patients had higher NIHSS (National Institutes of Health Stroke Scale) scores at admission, longer hospital stays, more complications during hospital stays or/and developed more physical dependence, the care needs level of the family caregivers would be higher. Family caregivers also realized that their care needs increased when they perceived worse health status and higher care burden. This study found that during the stage of being in hospital, the care needs of the family caregivers were mainly information about disease and helping from professionals. However, the family caregivers’ health status, anxiety level and care burden should also be taken into account seriously. The clinical nurses should conduct comprehensive assessment on the care needs of the family caregivers and offer individualized guide, along with making an individualized educational CD-ROM. In addition, the clinical practice could set up a support group to provide opportunities for experience sharing and offer socio-psychological support. Before the patients are discharged, chances should be taken to assess the possible care needs in homecare stage that family caregivers believe they may experience. Relevant information and a channel for counseling should be provided to the family caregivers so that they can acquire the information and help, as well as socio-psychological support, when they have the need.