a Behavioral Medicine , Winthrop P. Rockefeller Cancer Institute, University of Arkansas for Medical Sciences , Little Rock , Arkansas , USA.
b Department of Neurology , University of Texas Health Science Center at Houston, McGovern Medical School , Houston , Little Rock, Arkansas , USA.
J Psychosoc Oncol. 2018 Jul-Aug;36(4):454-469. doi: 10.1080/07347332.2018.1466845. Epub 2018 Jun 4.
The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of "preparedness," however, there is insufficient information about what cancer patients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development.
This qualitative study examined patient perspectives regarding preparedness for EOL care.
In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data.
Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning).
Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.
患者对临终(EOL)的准备程度可能与重要的临床结果相关。然而,尽管人们对“准备程度”的概念越来越感兴趣,但对于癌症患者实际上需要感到准备好哪些方面的信息却知之甚少。这些信息是患者为中心的护理、理论构建和仪器开发的基础。
这项定性研究探讨了患者对 EOL 护理准备程度的观点。
对患有晚期恶性肿瘤和预期寿命有限的患者进行了深入访谈。参与者来自一家大型学术癌症中心,患有各种恶性肿瘤。使用主题文本分析来分析数据。
出现了六个总体主题。这些主题包括准备好管理以下方面的担忧:(1)EOL 规划(例如,护理目标,护理地点);(2)与医疗保健提供者的互动(例如,沟通,症状控制);(3)与家人/朋友的互动(例如,感知负担,支持);(4)情感福祉(例如,存在性困扰,充实);(5)精神福祉(例如,精神安慰,会众支持);以及(6)财务福祉(例如,医疗费用,遗产规划)。
研究结果突出了患者自身认为对 EOL 护理准备程度至关重要的领域。参与者强调了比以前认为是患者准备程度方面的更广泛的问题,这些领域为干预提供了可修改的目标。