Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.
Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.
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DOI：
10.1016/j.yebeh.2023.109151
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发表时间：
2023-04
影响因子：
2.6
通讯作者：
Pugh, Mary Jo
中科院分区：
文献类型：
--
作者：
Viny, Mikayla;Trevino, Amira Y.;Bouldin, Erin D.;Kalvesmaki, Andrea;Roghani, Ali;Pugh, Mary Jo
成人癫痫患者的照顾者面临着独特的挑战，但大多数研究都集中在癫痫对患有这种疾病的人的影响上，而不是对照顾者的影响。我们的目标是评估照顾者与流行病相关的变化和经历--即与他们的健康、医疗保健获得和福祉相关的变化和经历--是否与他们的生活负担相关。通过Qualtrics小组招募了癫痫成年人的护理人员（n = 261），参加一项在线调查，检查2020年12月至12月的健康，幸福，COVID-19经历和护理人员负担。使用Zarit 12项指标测量负担;临床显著负担定义为评分大于16。已作出调整以计及与利息风险有关的负担分数。卡方检验、t检验和广义线性回归模型用于比较COVID-19经历和负担之间的横截面关联。超过一半（57.9%）的照顾者有临床显著的照顾者负担。大多数人报告在大流行期间焦虑（65%），压力（64%）和社会孤立感（58%）增加。许多护理人员报告说，由于COVID-19，他们对生活的控制感（44%）和他们对医疗保健的使用发生了变化（88%）。在调整后的模型中，在COVID-19期间报告愤怒增加、焦虑增加、控制感下降或医疗保健利用变化的护理人员与未报告变化的护理人员相比，具有临床显著护理人员负担的几率约为两倍。在大流行期间，成人癫痫患者的照顾者经历的变化与临床上显著的照顾者负担水平密切相关。这些研究结果表明，大规模事件，如大流行病，成年癫痫患者的照顾者可能承担的负担，以及随后的心理后果之间的联系。成人癫痫患者的照顾者可能需要支持，以减少COVID-19相关经历的负面影响，并应与有助于减轻其负担的医疗保健和资源联系起来。
Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers’ pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden. Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.
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影响因子：
3
作者：
Lai, Siew-Tim;Tan, Wan-Yen;Tan, Chong-Tin
通讯作者：
Tan, Chong-Tin
影响因子：
2.6
作者：
Hansen, Barbara;Szaflarski, Magdalena;Szaflarski, Jerzy P.
通讯作者：
Szaflarski, Jerzy P.
影响因子：
2.8
作者：
Budnick A;Hering C;Eggert S;Teubner C;Suhr R;Kuhlmey A;Gellert P
通讯作者：
Gellert P
影响因子：
3.7
作者：
Delgado RE;Peacock K;Wang CP;Pugh MJ
通讯作者：
Pugh MJ
DOI：
10.1155/2014/808421
发表时间：
2014
期刊：
Epilepsy research and treatment
影响因子：
--
作者：
Karakis I;Cole AJ;Montouris GD;San Luciano M;Meador KJ;Piperidou C
通讯作者：
Piperidou C