Doser Karoline, Norup Anne
a RUBRIC Research Unit on Brain Injury Rehabilitation Copenhagen, Department of Neurorehabilitation , Traumatic Brain Injury Unit, Rigshospitalet, Copenhagen University Hospital , Copenhagen , Denmark.
b Department of Neurology, Rigshospitalet , Copenhagen University Hospital , Copenhagen , Denmark.
Brain Inj. 2016;30(3):334-42. doi: 10.3109/02699052.2015.1114143. Epub 2016 Feb 1.
To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses.
Forty-four Danish caregivers of patients with severe brain injury were contacted 3-6 years post-injury and asked to complete a measure of caregiver burden.
Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden.
The findings emphasized the continuing consequences of brain injury on not only the individual with the brain injury, but also on the surrounding family. Spouses, caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs experienced higher levels of burden in the chronic phase. Future intervention programmes should target such specific caregivers, who might need more support and long-lasting help.
调查慢性期重型脑损伤患者家庭成员的照料者负担及与照料者负担相关的因素。此外，该研究旨在调查父母与配偶之间的负担差异。
在受伤3至6年后联系了44名丹麦重型脑损伤患者的照料者，并要求他们完成一项照料者负担测量。
分别有45%、16%和39%的家庭成员负担水平为中等、高和低。伤情更严重的患者的照料者负担更高，他们花费更多时间进行照料且报告有更多未满足的需求。总体而言，配偶照顾其家庭成员的时间显著多于父母，且报告的负担水平更高。
研究结果强调了脑损伤不仅对脑损伤个体，而且对周围家庭都有持续的影响。配偶、照料伤情更严重患者的照料者，他们花费更多时间进行照料且报告有更多未满足的需求，在慢性期经历了更高水平的负担。未来的干预项目应针对这类可能需要更多支持和长期帮助的特定照料者。
