School of Nursing, University of Texas, Austin, Texas 78701, USA.
J Palliat Med. 2013 Aug;16(8):971-4. doi: 10.1089/jpm.2013.0008. Epub 2013 Jun 25.
Personal control over end-of-life (EOL) care via advance care planning is a key component of high-quality care. Although this desire for control has been well documented in some populations, EOL care issues are not well understood within the disabilities community.
The objective for this study was to describe the relationships between individual demographic characteristics, health-related quality of life, health locus of control, and attitudes toward advance directives (ADs) in individuals who are disabilities activists.
We surveyed 55 participants attending a disability conference. Instruments included a demographic data sheet, the Advance Directive Attitude Survey (ADAS), the Multidimensional Health Locus of Control scale, and the Functional Assessment of Non-Life Threatening Conditions quality of life (QOL) scale.
Most participants were Hispanic females with some college education. About 46% had a disability. Group means revealed a high level of QOL (M=75.72, SD=19.09) and a positive attitude about ADs (M=66.49, SD=8.03). On the Opportunities for Treatment Choices subscale of the ADAS, activists without disabilities (M=14.23) were more positive about their control over EOL decisions than were the activists with disabilities (M=12.97) [t(2,52)=2.116, p<0.05].
Although participants were positive about ADs, differences in attitudes about control over opportunities for treatment choices between the nondisabled and disabled groups support previous findings that people with disabilities may have concerns regarding undertreatment for serious health conditions. Further study of EOL care issues for persons with disabilities is warranted.
通过预先医疗指示来掌控生命末期（EOL）护理是高质量护理的关键组成部分。尽管在某些人群中，这种控制欲已经得到了充分的证明，但残疾人群体对 EOL 护理问题的理解还不够。
本研究的目的是描述个人人口统计学特征、与健康相关的生活质量、健康控制源以及残疾活动家对预先医疗指示（AD）的态度之间的关系。
我们调查了参加残疾会议的 55 名参与者。使用的工具包括人口统计学数据表、AD 态度调查（ADAS）、多维健康控制源量表以及非威胁生命状况的功能评估生活质量（QOL）量表。
大多数参与者是具有一些大学学历的西班牙裔女性。约 46%的参与者有残疾。组平均值显示出较高的生活质量（M=75.72，SD=19.09）和对 AD 的积极态度（M=66.49，SD=8.03）。在 ADAS 的治疗选择机会子量表上，没有残疾的活动家（M=14.23）对自己掌控 EOL 决策的态度比残疾活动家（M=12.97）更为积极[t(2,52)=2.116，p<0.05]。
尽管参与者对 AD 持积极态度，但无残疾组和残疾组在对治疗机会选择的控制态度方面存在差异，这支持了先前的研究结果，即残疾人士可能对严重健康状况的治疗不足有所担忧。有必要进一步研究残疾人士的 EOL 护理问题。
