Delgado-Guay Marvin Omar, Parsons Henrique A, Hui David, De la Cruz Maxine G, Thorney Steven, Bruera Eduardo
Department of Palliative Care and Rehabilitation Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA.
Am J Hosp Palliat Care. 2013 Aug;30(5):455-61. doi: 10.1177/1049909112458030. Epub 2012 Sep 4.
Caregivers of patients with advanced cancer often face physical, social, and emotional distress as well as spiritual pain. Limited research has focused on the spiritual aspects of caregivers' suffering in the palliative care setting.
We interviewed 43 caregivers of patients with advanced cancer in our palliative care outpatient clinic. We determined demographic characteristics, religious affiliation, and relationship to the patient. Levels of spirituality, religiosity, and spiritual pain were self-reported using numeric rating scales (0 = lowest; 10 = highest). The participants completed various validated questionnaires to assess sleep disturbances, psychosocial distress, coping skills, and quality of life (QOL).
The median age was 52 years (range, 21-83); 29 (67%) were women, 34 (78%) were white, 7 (17%) were African American, and 2 (5%) were Hispanic; 39 (91%) were Christian, 1 (2%) was Jewish, and 1 (2%) was agnostic; 37 (86%) were married; 18 (42%) were working full time; and 25 (58%) were spouses. All considered themselves spiritual, and 98% considered themselves religious, with median scores of 8 (interquartile range, 6-10) and 8 (interquartile range, 4-9), respectively. All the caregivers reported that spirituality and religiosity helped them cope with their loved one's illness, and many reported that spirituality and religiosity had a positive impact on their loved one's physical (58%) and emotional (76%) symptoms. Spiritual pain was reported by 23 (58%), with a median score of 5 (interquartile range, 2-8). Caregivers with spiritual pain had higher levels of anxiety (median 10 vs 4; P = .002), depression (6 vs 2; P = .006), and denial (3 vs 2; P = .01); more behavioral disengagement (3 vs 2; P = 0.011) more dysfunctional coping strategies (19 vs 16; P < .001) and worse QOL (70 vs 51; P < .001) than those who did not have spiritual pain.
The majority of caregivers of patients with advanced cancer considered themselves spiritual and religious. Despite this, there is high prevalence of spiritual pain in this population. Caregivers with spiritual pain experienced worse psychological distress and worse QOL. These findings support the importance of spiritual assessment of and spiritual support for caregivers in this setting.
晚期癌症患者的照顾者常常面临身体、社交和情感上的困扰以及精神痛苦。在姑息治疗环境中,针对照顾者痛苦的精神层面的研究有限。
我们对姑息治疗门诊中43名晚期癌症患者的照顾者进行了访谈。我们确定了人口统计学特征、宗教信仰以及与患者的关系。使用数字评分量表(0 = 最低;10 = 最高)自我报告精神性、宗教性和精神痛苦的程度。参与者完成了各种经过验证的问卷,以评估睡眠障碍、心理社会困扰、应对技巧和生活质量(QOL)。
年龄中位数为52岁(范围21 - 83岁);29名(67%)为女性,34名(78%)为白人,7名(17%)为非裔美国人,2名(5%)为西班牙裔;39名(91%)为基督教徒,1名(2%)为犹太教徒,1名(2%)为不可知论者;37名(86%)已婚;18名(42%)全职工作;25名(58%)是配偶。所有人都认为自己有精神信仰,98%的人认为自己有宗教信仰,中位数得分分别为8(四分位间距,6 - 10)和8(四分位间距,4 - 9)。所有照顾者都报告称,精神性和宗教性帮助他们应对亲人的疾病,许多人报告说精神性和宗教性对亲人的身体(58%)和情感(76%)症状有积极影响。23名(58%)报告有精神痛苦,中位数得分为5(四分位间距,2 - 8)。有精神痛苦的照顾者在焦虑(中位数10对4;P = 0.002)、抑郁(6对2;P = 0.006)和否认(3对2;P = 0.01)方面的水平更高;与没有精神痛苦的照顾者相比,有更多的行为脱离(3对2;P = 0.011)、更多功能失调的应对策略(19对16;P < 0.001)以及更差的生活质量(70对51;P < 0.001)。
大多数晚期癌症患者的照顾者认为自己有精神信仰和宗教信仰。尽管如此,这一人群中精神痛苦的患病率很高。有精神痛苦的照顾者经历了更严重的心理困扰和更差的生活质量。这些发现支持了在这种情况下对照顾者进行精神评估和提供精神支持的重要性。