Aitken Mary E, McCarthy Melissa L, Slomine Beth S, Ding Ru, Durbin Dennis R, Jaffe Kenneth M, Paidas Charles N, Dorsch Andrea M, Christensen James R, Mackenzie Ellen J
Department of Pediatrics, University of Arkansas for Medical Sciences College of Medicine, Arkansas Children's Hospital Research Institute, Little Rock, Arkansas, USA.
Pediatrics. 2009 Jan;123(1):199-206. doi: 10.1542/peds.2008-0607.
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.
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.
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.
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.
创伤性脑损伤对照料者有重大影响。本研究描述了创伤性脑损伤患儿照料者所经历的负担，并探讨了损伤后第一年儿童功能与家庭负担之间的关系。
在4个参与研究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。照料者完成了基线以及3个月和12个月的电话访谈，使用儿童生活质量量表测量儿童与健康相关的生活质量。儿童健康问卷的情绪影响量表用于识别有严重困扰的照料者，包括总体担忧或对家庭日常的干扰。还测量了照料者对医疗需求是否得到满足的看法以及缺勤天数。
共纳入330名受试者；3个月时对312名进行了随访，12个月时对288名进行了随访。大多数受试者为白人（68%）且为男性（69%）。儿童生活质量量表的异常子分数与照料者的重大负担（总体担忧或对日常的干扰）相关。这些异常在3个月时超过75%的患者中被报告，并且在一些患者中持续到1年。父母对未满足的医疗需求的认知与家庭负担结果密切相关，在这一父母亚组中，高达69%报告有严重担忧，近四分之一报告在损伤后1年对日常生活/注意力有干扰。儿童功能障碍在3个月和12个月时可预测父母负担。当医疗需求未得到满足时负担更大。儿童生活质量量表的异常可预测父母的缺勤量，尤其是在存在未满足需求的情况下。
当儿童功能较差且医疗需求未得到满足时，照料者更有可能报告家庭负担问题。改进服务的识别和提供是一个潜在的可改变因素，可能会减轻小儿创伤性脑损伤后的家庭负担。
