Hwang David Y, Reichman Mira, Bannon Sarah M, Meurer Kate, Kubota Rina, Kim Jisoo, Baskaran Nithyashri, Zhang Qiang, Fishbein Nathan S, Lichstein Kaitlyn, Presciutti Alexander M, Woodworth Emily C, Motta Melissa, Muehlschlegel Susanne, Reznik Michael E, Jaffa Matthew N, Creutzfeldt Claire J, Fehnel Corey R, Tomlinson Amanda D, Williamson Craig A, Vranceanu Ana-Maria
Division of Neurocritical Care, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Department of Psychology, University of Washington, Seattle, WA, USA.
Neurocrit Care. 2025 Jan 16. doi: 10.1007/s12028-024-02202-z.
Family caregivers of patients with severe acute brain injury (SABI) are at risk for clinically significant chronic emotional distress, including depression, anxiety, and posttraumatic stress. Existing psychosocial interventions for caregivers of intensive care unit (ICU) patients are not tailored to the unique needs of caregivers of patients with SABI, do not demonstrate long-term efficacy, and may increase caregiver burden. In this study, we explored the needs and preferences for psychosocial services among SABI caregivers to inform the development and adaptation of interventions to reduce their emotional distress during and after their relative's ICU admission.
In this multicenter longitudinal qualitative study, we conducted semistructed interviews with SABI caregivers at two time points: during their relative's ICU admission (n = 30) and 2 months later (n = 20). We analyzed qualitative data using a hybrid of inductive and deductive analytic techniques. We recruited family caregivers of patients with SABI from 14 US neuroscience ICUs. We conducted interviews over live video. Our convenience sample of SABI caregivers (n = 30) was recruited through referral by medical teams and nursing staffs across participating neuroscience ICUs. Caregivers included spouses, children, parents, and siblings to patients with SABI.
We identified themes and subthemes related to participants' preferences for (1) the content of psychosocial support services and (2) the delivery and implementation of psychosocial support services. Findings revealed an unmet need for psychosocial support around the time of ICU discharge and 2 months later, including information to understand their loved one's condition and guide difficult decision-making, education regarding how best to communicate with the patient's care team and other family members, and emotional and behavioral coping skills.
Our findings provide specific recommendations to justify and inform the development and adaptation of psychosocial support services for SABI caregivers for delivery in the ICU and after discharge.
重症急性脑损伤（SABI）患者的家庭照护者面临临床上显著的慢性情绪困扰风险，包括抑郁、焦虑和创伤后应激。现有的针对重症监护病房（ICU）患者照护者的心理社会干预措施并非针对SABI患者照护者的独特需求而设计，未显示出长期疗效，且可能增加照护者负担。在本研究中，我们探讨了SABI患者照护者对心理社会服务的需求和偏好，以为干预措施的开发和调整提供依据，以减轻其亲属入住ICU期间及之后的情绪困扰。
在这项多中心纵向定性研究中，我们在两个时间点对SABI患者照护者进行了半结构式访谈：在其亲属入住ICU期间（n = 30）和2个月后（n = 20）。我们使用归纳和演绎分析技术相结合的方法分析定性数据。我们从美国14个神经科学ICU招募了SABI患者的家庭照护者。我们通过实时视频进行访谈。我们通过参与的神经科学ICU的医疗团队和护理人员的推荐，方便抽样招募了SABI患者照护者（n = 30）。照护者包括SABI患者的配偶、子女、父母和兄弟姐妹。
我们确定了与参与者对（1）心理社会支持服务内容和（2）心理社会支持服务的提供与实施的偏好相关的主题和子主题。研究结果显示，在ICU出院时及2个月后，心理社会支持存在未满足的需求，包括了解其亲人病情并指导艰难决策的信息、关于如何与患者护理团队及其他家庭成员进行最佳沟通的教育，以及情绪和行为应对技巧。
我们的研究结果提供了具体建议，以证明为SABI患者照护者在ICU期间及出院后提供心理社会支持服务的合理性，并为其开发和调整提供依据。
