Family Burden After Traumatic Brain Injury in Children
Family Burden After Traumatic Brain Injury in Children
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DOI：
10.1542/peds.2008-0607
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发表时间：
2009-01-01
期刊：
影响因子：
8
通讯作者：
MacKenzie, Ellen J.
中科院分区：
文献类型：
--
作者：
Aitken, Mary E.;McCarthy, Melissa L.;MacKenzie, Ellen J.
objective.创伤性脑损伤对照顾者有很大的影响。本研究描述了创伤性脑损伤儿童的照顾者所经历的负担，并探讨了儿童功能和家庭负担之间的关系，在伤后的第一年。在4个参与的创伤中心因创伤性脑损伤住院的5至15岁儿童符合条件。护理人员完成基线和3个月和12个月的电话访谈，使用儿科生活质量量表测量儿童的健康相关生活质量。儿童健康问卷的情绪影响量表被用来确定照顾者与实质性的痛苦，包括一般的担心或干扰家庭日常生活。护理人员对医疗保健需求是否得到满足以及错过工作的天数的看法也进行了测量。共入组330例受试者; 3个月时对312例受试者进行了随访，12个月时对288例受试者进行了随访。大多数受试者为白色（68%）和男性（69%）。异常的儿科生活质量量表子评分与大量的照顾者负担（一般的担心或干扰日常生活）有关。这些异常在3个月时由> 75%的患者报告，并且在一些患者中持续至1年。父母对未满足的医疗保健需求的看法与家庭负担结果密切相关，高达69%的父母报告了大量的担忧，近四分之一的人报告在受伤后1年干扰了日常生活/浓度。儿童功能障碍预测父母的负担在3个月和12个月。当医疗保健需求得不到满足时，负担会更大。对儿科生活质量量表的分析预测了父母错过的工作量，特别是在存在未满足的需求的情况下。当儿童功能较差和保健需求得不到满足时，照料者更有可能报告家庭负担问题。改善识别和提供服务是一个潜在的可修改的因素，可能会减少家庭负担后，小儿创伤性脑损伤。儿科2009; 123：199 - 206
OBJECTIVE. Traumatic brain injury has a substantial impact on caregivers. This study describes the burden experienced by caregivers of children with traumatic brain injury and examines the relationship between child functioning and family burden during the first year after injury.PATIENTS AND METHODS. Children aged 5 to 15 years hospitalized for traumatic brain injury at 4 participating trauma centers were eligible. Caregivers completed baseline and 3- and 12-month telephone interviews measuring the child's health-related quality of life using the Pediatric Quality of Life Inventory. The emotional impact scale of the Child Health Questionnaire was used to identify caregivers with substantial distress, including general worry or interference with family routine. Caregiver perceptions of whether health care needs were met or unmet and days missed from work were also measured.RESULTS. A total of 330 subjects enrolled; follow-up was conducted with 312 at 3 months and 288 at 12 months. Most subjects were white (68%) and male (69%). Abnormal Pediatric Quality of Life Inventory subscores were related to substantial caregiver burden (either general worry or interference in routine). These abnormalities were reported by > 75% of patients at 3 months and persisted to 1 year in some patients. Parental perception of unmet health care needs was strongly related to family burden outcomes, with up to 69% of this subset of parents reporting substantial worry, and nearly one quarter reporting interference with daily routine/concentration 1 year after injury. Child dysfunction predicted parental burden at 3 and 12 months. Burden was greater when health care need was unmet. Abnormalities on the Pediatric Quality of Life Inventory predicted the amount of work missed by parents, especially in the presence of unmet needs.CONCLUSIONS. Caregivers are more likely to report family burden problems when child functioning is poorer and health care needs are unmet. Improved identification and provision of services is a potentially modifiable factor that may decrease family burden after pediatric traumatic brain injury. Pediatrics 2009;123:199-206