Panday Janelle, Velikonja Diana, Moll Sandra E, Harris Jocelyn E
School of Rehabilitation Science, McMaster University, Institute for Applied Health Sciences, Hamilton, Canada.
Hamilton Health Sciences, Regional Rehabilitation Centre, Hamilton, Canada.
Disabil Rehabil. 2022 Sep;44(19):5539-5548. doi: 10.1080/09638288.2021.1938706. Epub 2021 Jun 24.
Perspectives of individuals with acquired brain injury (ABI) regarding inpatient rehabilitation experiences can inform patient-centered care; however, these voices are under-represented in the literature.
To explore the experiences, needs, and preferences of patients from an ABI inpatient rehabilitation program in Ontario.
Using an interpretive description approach, we interviewed 12 participants and analyzed the transcripts inductively to generate themes.
We identified three major themes: (1) - participants felt their lives diverted due to ABI, with rehabilitation seen as a way to return to pre-injury life, (2) highlighted the perceived importance of personal autonomy in decision-making within rehabilitation, and (3) reflected an ongoing recovery process after discharge - leading to mixed emotions. An overall message, "re-establishing personal identity is important to the recovery process," reflected theories of biographical disruption and relational autonomy.
Our findings provide a patient perspective for clinicians and administrators to consider. We found that ABI was significantly disruptive to personal identity - resulting in tensions in autonomy while attempting to reclaim a sense of identity. We suggest counseling services and strategies supporting post-injury adjustment, along with ways for rehabilitation professionals to enhance patient autonomy where possible.Implications for rehabilitationSustaining an ABI can significantly disrupt personal identity and sense of autonomy - especially as persons occupy the role of "patient" while in inpatient rehabilitation.Psychological support is recommended to address the impacts of ABI on patients' sense of identity, as well as on family members.Strategies of support might include, providing formal psychotherapy, as well as creating opportunities for patients and family members to discuss the changes they are experiencing, and to establish their personal narratives (e.g., through writing or art) or peer mentorship programs between discharged and current patients.Clinicians can enhance patient autonomy by increasing opportunities for communication with patients about choice; educating patients and family members on the rehabilitation team's decision-making process, and other methods that increase communication and provide consistent up-to-date information to patients and their family members.
后天性脑损伤(ABI)患者对住院康复经历的看法可为以患者为中心的护理提供参考;然而,这些声音在文献中未得到充分体现。
探讨安大略省一个ABI住院康复项目中患者的经历、需求和偏好。
采用解释性描述方法,我们采访了12名参与者,并对访谈记录进行归纳分析以生成主题。
我们确定了三个主要主题:(1)参与者感到由于ABI他们的生活偏离了正轨,康复被视为回归受伤前生活的一种方式;(2)强调了个人自主性在康复决策中的重要性;(3)反映了出院后持续的康复过程——引发了复杂的情绪。一个总体信息“重建个人身份对康复过程很重要”反映了传记性中断和关系自主性的理论。
我们的研究结果为临床医生和管理人员提供了一个患者视角以供参考。我们发现ABI对个人身份有重大干扰——在试图恢复身份感时导致自主性方面的紧张关系。我们建议提供咨询服务和支持受伤后调整的策略,以及康复专业人员在可能的情况下增强患者自主性的方法。
对康复的启示
患有ABI会严重扰乱个人身份和自主感——尤其是当患者在住院康复期间扮演“患者”角色时。
建议提供心理支持,以应对ABI对患者身份感以及家庭成员的影响。
支持策略可能包括提供正式的心理治疗,以及为患者和家庭成员创造机会,讨论他们正在经历的变化,并建立他们的个人叙事(例如通过写作或艺术),或者在出院患者和当前患者之间开展同伴指导计划。
临床医生可以通过增加与患者关于选择的沟通机会;向患者和家庭成员介绍康复团队的决策过程,以及其他增加沟通并向患者及其家庭成员提供一致最新信息的方法,来增强患者的自主性。