中晚期肝癌病人之主要照護者的支持性照護需求及其相關因素之探討

Abstract

肝癌是2012年台灣十大癌症死因的第二名。由於肝癌存活期短及高復發率特性，除了影響肝癌病人之外，同時也影響主要照護者之生活品質及心理健康，進而衍伸出支持性照護需求。回顧文獻，關於照護者支持性照護需求的研究目前仍以疾病末期與診斷期居多，中晚期的研究寥寥可數。有鑑於此，本研究為探討中晚期肝癌病人(BCLC stage B or C)之主要照護者的支持性照護需求及影響因素。研究目的為：一、探討中晚期肝癌病人的人口學特徵、接受治療的方式、身體功能狀態、健康相關生活品質與主要照護者之支持性照護需求相關性。二、探討中晚期肝癌病人的主要照護者的人口學特徵、照護時間與型態、焦慮、憂鬱狀態與主要照護者之支持性照護需求的相關性。三、瞭解主要照護者的支持性照護需求及各需求面的影響因子。 研究設計為橫斷式、描述性的相關研究，針對中晚期肝癌病人及其主要照護者，以立意取樣的方式及結構式問卷在北部某醫學中心門診及病房進行收案，總個案數為90位病人及其主要照護者，主要照護者以女性為最多（佔72.2%），平均年齡為47.1歲。研究工具在病人部分：人口學資料表、身體功能量表、歐洲癌症研究與治療組織生活品質量表中文版及其肝癌患者補充問卷；主要照護者部分：主要照護者人口學資料表、支持性照護需求量表、醫院焦慮憂鬱量表。研究資料以平均值、標準差、百分比、排序、t檢定、皮爾森相關分析、單因子變異數分析、廣義估計方程式作分析。研究結果顯示：（1）主要照護者未滿足支持性照護需求以健康照護層面為最多，其次依序為資訊、心理與情緒、工作與社會需求；（2）支持性照護需求與病人變項中的：生理功能、整體生活品質、情緒功能、症狀部分的疼痛、疲倦、性生活改變成顯著相關；（3）支持性照護需求與主要照護者變項中的：焦慮、憂鬱成顯著相關；（4）主要照護者的焦慮為影響資訊需求、健康照護需求、工作與社會需求、心理與情緒需求及總需求的重要解釋因子。由研究結果可知，主要照護者的焦慮是影響其照護需求的重要因素，是迫切需要被臨床醫護人員所關注及處理的，因此深入瞭解主要照護者的焦慮來源以及如何有效協助情緒抒發是未來值得研究的方向。研究結果可幫助未來改善肝癌主要照護者之支持性照護需求的相關臨床照護、護理教育及護理研究。

Hepatocellular carcinoma was the second leading cause of cancer deaths in Taiwan in 2012. The poor prognosis in patients with hepatocellular carcinoma not only heavily impacts the quality of life and mental health of both patients and family caregivers, but it also increases the caregivers’ supportive care needs. Most previous studies on caregivers’ supportive care needs included patients at diagnosis or terminal cancer patients. Few studies focused on primary caregivers of patients with intermediate or advanced stage hepatocellular carcinoma. This study aims to investigate the supportive care needs in primary caregivers of patients with intermediate and advanced stage hepatocellular carcinoma. The purposes of this study were: (1)to explore the relationships of primary caregivers’ supportive care needs with patients’ demographic profiles, treatments, performance status and patients’quality of life; (2)to explore the relationships of primary caregivers’ supportive care needs with primary caregivers’ demographic profiles, anxiety and depression status, durations and patterns of care;and (3) to explore the supportive care needs and important explanatory factors. We conducted a cross-sectional, structured questionnaire survey with purposive sampling in a medical center in Northern Taiwan. Structured questionnaires include: (1) The Patients’ Part: patients’ demographic profiles, performance status assessed by Karnofsky Performance Status Scale, and quality of life assessed by The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and similar questionnaire module for hepatocellular carcinoma (EORTC QLQ-HCC18) (2)The Primary Caregivers’ Part: primary caregivers’ demographic profiles, supportive care needs assessed by Supportive Care Needs Survey-Partners & Caregivers 45 (SCNS-P&C 45), and psychological distress status assessed by Hospital Anxiety and Depression Scale (HADS). Data were analyzed by descriptive statistics, independent samples t-test, Pearson’s correlation, one way-ANOVA, and Generalized Estimating Equations. Nighty pairs of eligible patients and their primary caregivers were recruited. 72.2% of recruited primary caregivers were female with mean age of 47.1 years old.The results indicated that: (1) health care needs was the highest unmet supportive care needs of caregivers, followed by information needs, psychological and emotional needs, and social and work needs; (2) poorer physical and emotional functions, poorer global health status/quality of life, pain, fatigue, and lower sexual interest of patients were correlated with higher supportive care needs of caregivers (p<0.05); (3) higher levels of anxiety and depression among caregivers were correlated with higher supportive care needs of caregivers(p<0.05) ;and (4) higher level of anxiety among primary caregivers was an important determinant of increases in information needs, health care needs, psychological and emotional needs, social and work needs, and total supportive care needs of caregivers. In conclusion, the primary caregivers’ anxiety status heavily influenced their supportive care needs, and clinical staff should be concerned with this issue. The main sources of anxiety in caregiver and the effective ways to express emotions properly are both important areas for further research. This study provides valuable information about supportive care needs in primary caregivers of patients with heaptocellular carcinoma and it is helpful in clinical care, education and future research in nursing.