Department of Population Health Sciences, School of Medicine and Public Health, University of Wisconsin, Madison, 610 North Walnut Street, Office 503, Madison, WI 53726, USA.
Qual Life Res. 2011 Oct;20(8):1261-9. doi: 10.1007/s11136-011-9854-2. Epub 2011 Feb 2.
Understanding the impact of childhood cancer on the family is increasingly important. This study aimed to (1) examine the relationship between child clinical characteristics and health-related quality of life (QOL) among parents of children with cancer or brain tumors, and (2) determine how parental psychosocial factors impact this relationship.
Using a within-group approach, this study examined 75 children with cancer or brain tumors and their parent. In-person interviewer-assisted surveys assessed sociodemographics, psychosocial factors, and QOL. Child clinical characteristics were obtained through medical record abstraction. Regressions were performed to determine factors related to parental QOL.
Children's activity limitation and active treatment status were associated with worse parental mental QOL (5.4 and 4.4 points lower, respectively; P < 0.05). Adding parental psychosocial characteristics to the model eliminated the relationship between child clinical characteristics and parental mental QOL (P > 0.05 for all child characteristics).
While child clinical characteristics appear to be related to poor parental QOL, this relationship was mediated by caregiver burden and stress. Interventions to reduce burden and stress may mitigate the deleterious effects of caregiving. Systematic screening of parents' mental and physical health may facilitate interventions and improve the health and well-being of parents and children.
了解儿童癌症对家庭的影响变得越来越重要。本研究旨在：(1) 研究儿童癌症或脑肿瘤患儿父母的子女临床特征与健康相关生活质量（QOL）之间的关系；(2) 确定父母心理社会因素如何影响这种关系。
本研究采用组内方法，共纳入 75 名患有癌症或脑肿瘤的儿童及其父母。通过面访调查评估了社会人口学、心理社会因素和 QOL。通过病历摘录获取儿童临床特征。采用回归分析确定与父母 QOL 相关的因素。
儿童的活动受限和积极治疗状态与父母的心理健康 QOL 较差相关（分别低 5.4 和 4.4 分；P<0.05）。将父母的心理社会特征纳入模型后，消除了儿童临床特征与父母心理健康 QOL 之间的关系（所有儿童特征的 P 值均>0.05）。
虽然儿童的临床特征似乎与父母较差的 QOL 有关，但这种关系是由照顾者的负担和压力介导的。减轻负担和压力的干预措施可能会减轻照顾的不利影响。对父母的心理健康和身体健康进行系统筛查可能有助于实施干预措施，并改善父母和儿童的健康和福祉。
