Mack Jennifer W, Wolfe Joanne, Cook E Francis, Grier Holcombe E, Cleary Paul D, Weeks Jane C
Department of Medicine, Children's Hospital, Boston, Massachusetts, USA.
Arch Pediatr Adolesc Med. 2009 Jun;163(6):519-24. doi: 10.1001/archpediatrics.2009.57.
To evaluate issues experienced by parents of children with cancer and factors related to parents' ability to find peace of mind.
Cross-sectional survey.
Dana-Farber Cancer Institute and Children's Hospital, Boston, Massachusetts.
One hundred ninety-four parents of children with cancer (response rate, 70%) in the first year of cancer treatment.
The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being sense of meaning subscale.
Principal components analysis of Functional Assessment of Chronic Illness Therapy-Spiritual Well-being sense of meaning subscale responses identified 2 distinct constructs, peace of mind (Cronbach alpha = .83) and sense of purpose (Cronbach alpha = .71). Scores ranged from 1 to 5, with 5 representing the strongest sense of peace or purpose. One hundred forty-seven of 181 parents (81%) scored 4 or higher for questions related to sense of purpose (mean [SD] score, 4.4 [0.6]). Only 44 of 185 parents (24%) had scores in the same range for peace of mind (mean [SD] score, 3.2 [0.9]) (P < .001). In a multivariable logistic regression model, parents had higher peace of mind scores when they also reported that they trusted the oncologist's judgment (odds ratio [OR] = 6.65; 95% confidence interval [CI], 1.47-30.02), that the oncologist had disclosed detailed prognostic information (OR = 2.05; 95% CI, 1.14-3.70), and that the oncologist had provided high-quality information about the cancer (OR = 2.54; 95% CI, 1.11-5.79). Peace of mind was not associated with prognosis (OR = 0.74; 95% CI, 0.41-1.32) or time since diagnosis (OR = 1.00; 95% CI, 0.995-1.003).
Physicians may be able to facilitate formulation of peace of mind by giving parents high-quality medical information, including prognostic information, and facilitating parents' trust.
评估癌症患儿家长所经历的问题以及与家长获得内心安宁能力相关的因素。
横断面调查。
马萨诸塞州波士顿的达纳-法伯癌症研究所和儿童医院。
194名癌症患儿的家长（回复率70%），均处于癌症治疗的第一年。
慢性病治疗功能评估-精神幸福感意义子量表。
对慢性病治疗功能评估-精神幸福感意义子量表的回复进行主成分分析，确定了2个不同的结构，即内心安宁（克朗巴哈α系数 = 0.83）和目标感（克朗巴哈α系数 = 0.71）。分数范围为1至5分，5分代表最强的安宁感或目标感。181名家长中有147名（81%）在与目标感相关的问题上得分4分或更高（平均[标准差]得分，4.4[0.6]）。185名家长中只有44名（24%）在内心安宁方面的得分处于同一范围（平均[标准差]得分，3.2[0.9]）（P < 0.001）。在多变量逻辑回归模型中，当家长报告他们信任肿瘤学家的判断（比值比[OR] = 6.65；95%置信区间[CI]，1.47 - 30.02）、肿瘤学家已披露详细的预后信息（OR = 2.05；95% CI，1.14 - 3.70）以及肿瘤学家已提供有关癌症的高质量信息（OR = 2.54；95% CI，1.11 - 5.79）时，他们的内心安宁得分更高。内心安宁与预后（OR = 0.74；95% CI，0.41 - 1.32）或确诊后的时间（OR = 1.00；95% CI，0.995 - 1.003）无关。
医生或许能够通过向家长提供包括预后信息在内的高质量医疗信息并增进家长的信任，来促进家长内心安宁的形成。
