Meurer Katherine J, Presciutti Alexander M, Bannon Sarah M, Kubota Rina, Baskaran Nithyashri, Kim Jisoo, Zhang Qiang, Reichman Mira, Fishbein Nathan S, Lichstein Kaitlyn, 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, Hwang David Y
Albert Einstein College of Medicine, New York, NY, USA.
Department of Psychiatry, Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Neurocrit Care. 2025 Jun 6. doi: 10.1007/s12028-025-02294-1.
Family caregivers of patients with severe acute brain injury (SABI) who commit to tracheostomy and/or percutaneous endoscopic/surgical gastrostomy for the patient often develop chronic emotional distress. To inform future interventions to mitigate this distress, we characterized the stressors and coping strategies of caregivers of patients with SABI with varying levels of emotional distress during the acute and postacute stages of treatment.
We conducted semistructured interviews with family caregivers of patients with SABI around the time of neurological intensive care unit discharge (T1) and at 2-month follow-up (T2). All caregivers included in this current study completed the Hospital Anxiety and Depression Scale at T1 and/or T2. We then stratified transcripts by caregiver distress level, characterizing caregivers who scored > 11 on at least one Hospital Anxiety and Depression Scale subscale as "high distress" and ≤ 11 as "low distress." We conducted deductive, conceptual content analysis to compare perceived stressors and coping strategies employed at both time points.
Caregivers in both strata reported many similar stressors at each time point, including ongoing uncertainty. However, there were also differences in stressors by level of distress and time point of assessment. At T1, high-distress caregivers reported pronounced stress related to navigating the health care system and communicating with providers, staff, and the patient. At T2, high-distress caregivers noted heightened difficulty with transitioning to long-term caregiving, co-occurring complex emotions, and communication with family and friends. Conversely, low-distress caregivers focused on challenges with team-based medical decision making at T2. Clear differences in coping strategies also emerged, such that high-distress caregivers relied primarily on avoidance at both points, whereas low-distress caregivers incorporated more problem-solving and self-care strategies.
Psychosocial interventions for caregivers of patients with SABI are needed to reduce emotional distress. Skills should be applied to relevant topics based on time since neurological intensive care unit discharge and distress level. Skills should focus on reducing avoidance, promoting active coping, and targeting the perceived stressors specific to high-distress versus low-distress caregivers revealed here.
对于那些为患有严重急性脑损伤（SABI）的患者实施气管切开术和/或经皮内镜/外科胃造口术的患者家属而言，他们常常会产生慢性情绪困扰。为了为未来减轻这种困扰的干预措施提供依据，我们对在治疗的急性期和急性后期处于不同情绪困扰水平的SABI患者家属的压力源和应对策略进行了描述。
我们在神经重症监护病房出院时（T1）和2个月随访时（T2），对SABI患者的家属进行了半结构化访谈。本研究纳入的所有家属在T1和/或T2时均完成了医院焦虑抑郁量表。然后，我们根据家属的困扰程度对访谈记录进行分层，将在至少一个医院焦虑抑郁量表子量表上得分>11分的家属定义为“高困扰”，得分≤11分的家属定义为“低困扰”。我们进行了演绎性概念内容分析，以比较两个时间点所感知到的压力源和采用的应对策略。
两个分层的家属在每个时间点都报告了许多相似的压力源，包括持续的不确定性。然而，压力源在困扰程度和评估时间点上也存在差异。在T1时，高困扰的家属报告称，在应对医疗系统以及与医护人员、工作人员和患者沟通方面存在明显压力。在T2时，高困扰的家属指出，向长期护理过渡、同时出现的复杂情绪以及与家人和朋友沟通方面的困难加剧。相反，低困扰的家属在T2时关注基于团队的医疗决策方面的挑战。应对策略也出现了明显差异，高困扰家属在两个时间点主要依赖回避策略，而低困扰家属则更多地采用解决问题和自我护理策略。
需要针对SABI患者家属开展心理社会干预，以减轻其情绪困扰。应根据神经重症监护病房出院后的时间和困扰程度，将相关技能应用于相关主题。技能应侧重于减少回避行为、促进积极应对，并针对此处揭示的高困扰与低困扰家属所感知到的特定压力源。
