由家屬的角度探討長期呼吸器依賴患者的照護問題

Care Needs of Long-term Ventilator-dependent Patients from Perspectives of Family Members

陳慧秦(Hui-Chin Chen)

指導教授 ： 鄭文輝

亞洲大學/健康學院/長期照護研究所/碩士(2007年)

摘要

呼吸器依賴患者整合性照護系統，是藉由這個管理式的照護計畫，提供呼吸器依賴患者完整的醫療照護，進而提高照護品質及節省醫療成本雙重效應。本研究目的乃想瞭解長期呼吸器依賴患者家屬在整個照護過程中的心路歷程與想法；探討影響家屬選擇照護地點，呼吸照護病房或居家照護之相關因素考量；且從家屬的角度來看呼吸照護病房和居家照護成本的差異；最後預瞭解家屬長期照護的需求和居家照護的意願，作為以後長照制度政策擬定的參考。
本研究採質性、深度訪談的紮根理論研究法，藉由半結構式的訪談指引作資料的收集。研究對象為中區某區域教學醫院，長期臥床使用呼吸器的氣切病人經呼吸照護中心(RCC)住滿下轉至呼吸照護病房(RCW)和居家照護的長期呼吸器依賴患者之家屬。呼吸照護病房組4位，居家照護組4位，共8位。
本研究結果分個案分析、跨案分析及不同照護模式的比較。在整個照護過程中的心路歷程與想法，居家照護組的家屬早期大部分會經歷到害怕、難過沮喪，且對呼吸器不熟悉。其中一位家屬表示不合理，認為不應依時間的長短來訂，而是依照病情來決定下轉的時機；但到後期，皆接受這個事實。呼吸照護病房組的家屬，則因人力或經濟問題而煩惱，最後選擇機構照顧。在考量照護地點的相關因素裡，其家屬的特質、認知，心理情緒負擔，照顧條件、能力，病患的特質，住家環境，社交支持，經濟狀況皆會影響照護地點的選擇。兩組的共通點是當初皆認為個案會變好，而居家照護組正向的情緒多於呼吸照護病房組，負向方面兩組差不多，皆會面臨壓力，不管來自病情上或經濟上。長期下來，兩組大部分的家屬都會憂慮、擔心錢不夠。在家屬所花費的照護成本方面，居家照護組每月大約在4萬～6萬5之間；呼吸照護病房組含自請外勞每月約3～4萬元，若單純的機構照護費用則在2萬～2萬5千元之間。明顯居家照護組遠多於呼吸照護病房組。在家屬長期照護的需求和居家照護的意願上，兩組皆認為現在政府的政策有缺失，且無法落實，社會福利申請不易。更重要的是，兩組皆希望有現金補助。至於社會福利喘息服務和居家服務，皆認為不需要。若再一次重新選擇照護地點的話，所有家屬一致認為決定不變。
根據上述發現，藉由深入的訪談和資料分析，可構成一個長期呼吸器依賴患者和家屬的長照需求圖，包含政策整合與落實、現金補助、長期照護保險、居家出院準備服務、居家緊急求救線路。對政府單位、健保局、醫療單位、家屬和相關團體給予幾點建議。希望本研究做為一個開端、指引，未來可擴大研究對象及個案數，作為未來長期照護規劃的參考。

關鍵字

長期呼吸器依賴患者 ； 呼吸器依賴患者整合性照護系統 ； 居家照護 ； 呼吸照護病房 ； 照護成本

並列摘要

An Integrated Delivery System (IDS) for ventilator-dependent patients not only provided a complete managed care plan for the ventilator-dependent patients, but also improved the quality of the medical care while reducing its cost.

Purpose: The purpose of this study was to understand the thoughts and the psychological impact to the family members who took care of the long-term ventilator-dependent patients during the process of managed care. Firstly, the study examined the factors in choosing the location of care; either Home Care or Respiratory Care Ward. Secondly, the study analyzed the cost of the Home Care or the Respiratory care ward, from the points of the view of patients’ families. Finally the study examined the families' needs as regards long term managed care and their intentions as regards home care. The outcome will serve as a reference for the long term care policy.

Method: The methods used to conduct the study included qualitative research, in depth interviews grounded theory, and the semi-constructed interviews as instructions for data collection.

Target: At a local teaching hospital in the central Taiwan, the subject of the study are the families of the patients who were tracheotomy-patients on a ventilator, transferred from respiratory care center (RCC) down to either respiratory care ward (RCW), or to long term mechanical ventilation home care. There are 8 persons in total, 4 in the Respiratory Care Ward group and 4 in the Home Care group.

Result: The outcomes were divided to the individual analysis, cross-case analysis, and the comparison of different medical care models.
In term of the thoughts and the psychological impact to the families, most of the Home Care group experienced the fear, sadness, depression, and unfamiliar with ventilators. One of the family members thought it was unreasonable since the step down was decided by the number of days, instead of the situation of the patient. But in the end, they all accepted the reality.
On the other hand, the family members of the Respiratory Care Ward group were more concerned with the lack of labor and money, and choose the Respiratory Care organization. The factors affect them to choose the location of the respiratory care organization were: the characters, acknowledge, and the psychological emotion burden of the family members; the facilities to take care of the patients; the ability of the family member to take care of the patients; the characters of the patients; living environment; social support; and financial situation.
Both groups had the initial hope that the patients would get better. The Home Care group was more optimistic than the Respiratory Care Ward group. Both groups suffered negative emotions, facing the pressure from the illness or the financial burden.
In the long run, the family members of both groups got worried. They worried if the expense will be too much to handle. The cost of managed care, Home Care cost was about NT$40,000 to 65,000, while Respiratory Care Ward cost was about NT$30,000 to 40,000 total each month. This includes the expense of hiring a foreign labor. It paid NT$20,000 to 25,000 to the respiratory agent. Clearly, the cost of Home Care group is more than Respiratory Care Ward group.
Both the Home Care and Respiratory Care Ward groups claimed the current governments policies was not good enough, lack of reality, it was difficult to apply the social benefits. And the most important is: both groups were hoping to receive cash assistance.
As far as the social benefits of respite care and home service, both groups thought those benefits were unnecessary. If they had the chance to choose their care location, neither group would change their decision.

Conclusion: The study had used the in depth interviews and data analysis, it had constructed a blue map to reflect the needs of the long-term ventilator-dependent patients and their families. It is hoped that this study will serve as a starting point to examine the possibilities. By expanding the number of members and study cases, this can serve as a reference of the long term medical care plans in the future.

並列關鍵字

long-term ventilator-dependent patients ； integrated delivery system of ventilator-dependent patients ； home care ； respiratory care ward ； cost analysis

參考文獻

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