Pasipanodya Elizabeth C, Gopalan Ramya, Truong Phuoc Thien, Khong Cria-May, Dirlikov Benjamin, Held Mark, Myhre Janelle, Shem Kazuko
Rehabilitation Research Center, Santa Clara Valley Medical Center, San Jose, California.
College of Osteopathic Medicine, Touro University California, Vallejo, California.
Arch Rehabil Res Clin Transl. 2024 Dec 17;7(1):100410. doi: 10.1016/j.arrct.2024.100410. eCollection 2025 Mar.
To describe and enumerate the prevalence of concerns and stressors experienced by individuals with spinal cord injury (SCI) during subacute injury.
A within-arm (intervention only) qualitative analysis of psychotherapy notes obtained during the 12-week active phase of a randomized controlled trial of tele-cognitive behavioral therapy (tele-CBT). Therapy sessions were conducted between January 2019 and February 2023.
Community setting.
Twenty-two individuals (men: n=14; women: n=8) were included in the analyses; the average age was 44.8 years (SD=18.1) and the mean injury duration was 103.14 days (SD=78.3).
Participants engaged in 10 (45-60min) CBT sessions with a licensed psychologist; CBT sessions were administered via Apple FaceTime weekly for 8 weeks and then biweekly for 4 weeks, for a total of 10 sessions over 12 weeks.
The analyses presented here differ from the main planned analyses to gauge the efficacy of intervention in the study. Psychotherapy notes were qualitatively coded to identify participant endorsements of negative life events, general and SCI-related complaints, and stressors; these inventoried concerns were hierarchically organized into larger subthemes and themes, following Bronfenbrenner's and McLeroy's socioecological framework.
Thematically, concerns articulated by individuals with SCI were intrapersonal (cognitive/emotional, somatic, and behavioral), interpersonal (relationships with significant others, with friends and family, with paid caregivers, and with medical providers as well as pet-related concerns), and environmental (access to health care and insurance, accessibility of public spaces, supportive housing, and stigma and discrimination). Compared with research that has enumerated domains of importance among individuals living with SCI, concerns around loss of independence and care burden were more frequently endorsed while bladder/bowel dysfunction and sexual/reproductive concerns were articulated only by a minority of participants. Indeed, across all participants, the most frequently endorsed concerns included pain (n=16; 72.7%), loss of independence (n=12; 54.6%), poor sleep (n=11; 50.0%), and self-perceived care burden (n=11; 50.0%).
Individuals with SCI experience a broad range of concerns across multiple ecological levels, some of which are anticipatory (eg, worry about fulfilling duties, once returned to work) and are not SCI-specific (eg, improving health behaviors, managing grief after bereavement). Multimodal and multidisciplinary approaches are needed to provide effective interventions to improve the quality of life.
描述并列举脊髓损伤(SCI)患者在亚急性损伤期间所经历的担忧和压力源的普遍性。
对远程认知行为疗法(tele-CBT)随机对照试验12周活跃期获得的心理治疗记录进行组内(仅干预)定性分析。治疗课程于2019年1月至2023年2月期间进行。
社区环境。
22名个体(男性:n = 14;女性:n = 8)纳入分析;平均年龄为44.8岁(标准差 = 18.1),平均损伤持续时间为103.14天(标准差 = 78.3)。
参与者与一名有执照的心理学家进行10次(45 - 60分钟)认知行为疗法课程;认知行为疗法课程通过苹果FaceTime每周进行一次,共8周,然后每两周进行一次,共4周,在12周内共进行10次课程。
此处呈现的分析与评估研究中干预效果的主要计划分析不同。对心理治疗记录进行定性编码,以识别参与者对负面生活事件、一般和SCI相关抱怨以及压力源的认可;按照布朗芬布伦纳和麦克勒罗伊的社会生态框架,将这些列出的担忧分层组织成更大的子主题和主题。
从主题上看,SCI患者表达的担忧包括个人内部(认知/情感、躯体和行为)、人际(与重要他人、朋友和家人、付费护理人员、医疗提供者的关系以及与宠物相关的担忧)和环境(获得医疗保健和保险、公共场所的可达性、支持性住房以及耻辱和歧视)方面。与列举SCI患者重要领域的研究相比,围绕失去独立性和护理负担的担忧更常被认可,而膀胱/肠道功能障碍以及性/生殖方面的担忧只有少数参与者提及。事实上,在所有参与者中,最常被认可的担忧包括疼痛(n = 16;72.7%)、失去独立性(n = 12;54.6%)、睡眠不佳(n = 11;50.0%)和自我感知的护理负担(n = 11;50.0%)。
SCI患者在多个生态层面经历广泛的担忧,其中一些是预期性的(例如,担心一旦重返工作岗位如何履行职责),且并非SCI特有的(例如,改善健康行为、处理丧亲后的悲伤)。需要多模式和多学科方法来提供有效的干预措施以改善生活质量。