居家緩和醫療家庭主要照顧者之需求與滿意度

The Needs and Satisfacton of Main Family Caregivers in Domicillary Palliative Care

為瞭解癌末病患家庭主要照顧者之照顧需求、服務滿意度及其影響因素以提供更好的居家癌末照顧，本研究針對一年間接受過居家緩和醫療但已過世且願意接受調查的癌末患者之家庭主要照顧者，以郵寄問卷方式進行資料收集，共完成43位個案，回收率為82%。研究發現主要結果為：(1)所有家庭主要照顧者皆擔心「突發狀況自己不會處理」，九成以上會擔心「病人吃不下東西或失去吞食能力」以及「缺乏照顧病人所需器材」。(2)照顧需求程度最高的項目為資訊的需要，占87.9%，其中又以「如何處理病人的身體症狀」居首，占92.9%。(3)居家期間家庭主要照顧者自覺癌末患者出現頻率及嚴重程度較高的前五項身體症狀，依序為「疼痛、吃不下、疲倦、意識不清及噁心」，86.8%的家庭主要照顧者對醫療人員在症狀控制的幫助感到滿意或非常滿意。(4)整體而言，平均78.9%的家庭主要照顧者對資訊、個人、心理及靈性方面的支持有高照顧需求；97.0%自覺醫療人員實際上有給予以上各方面需要的指導或協助；80.7%對醫療人員提供的服務表示滿意或非常滿意。另有九成的家庭主要照顧者於日後會建議其他親友接受居家緩和醫療，此外，有二成的家屬對後續之哀慟輔導有明顯的需要。(5)家庭主要照顧者的年齡為30~39歲及40~49歲者、教育程度為高中；病人本身為女性、道教信仰、年齡為60~69歲與70~79歲者，對於醫療人員提供的服務有較高的滿意度（p≦0.05或p≦0.01）。由上述結果可知，加強居家緩和醫療專業訓練、增添照顧人力及建立社區支持系統，以延續住院時所提供之身心靈整體照顧是居家緩和醫療成敗關鍵。本研究結果呈現之高滿意度，除可鼓勵居家緩和醫療的推展外，亦可由照顧者需求調查結果，研擬更符合病人及家屬期望的照顧模式。

We conducted a questionnaire survey of the main caregivers of patients discharged from a palliative care unit. The purposes of this study were to investigate the needs of the main caregivers and their satisfaction with support from the domicillary palliative care team. Forty-three respondents complated the questionnaires. The results showed that: all of the main caregivers worried that “they could not manage emergeny conditions”. More than 90% of caregivers also worried about “ eating problem of patients” and “lack of equipment for care”. The most important item chosen by caregivers with regard to the provision of patient care was “the need for full information”(88%), and 93% of caregivers identified “how to control the symptoms of patients” as the first priority for information. The major physical symptoms of the patients, ranked by prevalence and severity, were pain, dysphagia, weakness, cognitive impairment, and nausea; however 87% of caregivers were satisfied with the control of symptoms. The needs for information, as well as personal, psychological, and spiritual support were common (average 79%). All caregivers recognized that almost all the above needs were already being addressed by the domicillary palliative care team, and 80% were satisfied with the level of support. About 90% of respondents said that they would encourage other patients to receive care at home, if necessary. In conclusion, improved professional education and increased team manpower may help to provide total care, which is the key to success in domicillary palliative care. The high satisfaction rate of caregivers in this study encourages further development of domicillary palliative care. Meanwhile, the findings of this study provide valuable information for improving home care for terminally ill patients.