Smith Rhiannon M, Schliep Megan E, Plummer Prudence
MGH Institute of Health Professions, Boston, MA, USA.
Children and Adult Disability & Educational Services (CADES), Swarthmore, PA, USA.
Adv Rehabil Sci Pract. 2024 Mar 21;13:27536351241237865. doi: 10.1177/27536351241237865. eCollection 2024 Jan-Dec.
Self-perceived recovery after stroke can substantially impact quality of life. Yet, a disability paradox exists whereby disability and perceived recovery do not align. This study explored stroke survivors' perceptions of their communication and mobility recovery, including perceived facilitators and barriers. Potential differences between the experiences of participants with aphasia (PWA) and participants without aphasia (PWOA) were also examined to explore the impact of communication disability on recovery experience. Semi-structured interviews were conducted with 17 adults with stroke 3 months after discharge from inpatient rehabilitation. Qualitative data in the form of interview transcripts were analyzed using thematic content analysis. Participants described their communication recovery primarily in terms of word-finding difficulty and slowed language formulation; they described their mobility recovery in terms of their ability to walk, their use of an assistive device, or their ability to participate in pre-stroke activities. Facilitators to recovery were described in the areas of (1) family involvement, (2) rehabilitation services and professionals, (3) personal factors, and (4) the need for self-reliance. Barriers were expressed in the domains of (1) physical difficulties, (2) communication difficulties, and (3) psychological difficulties. Key findings from this study include perceived needs for a high intensity of rehabilitation, earlier implementation of communication partner training for families of stroke survivors with communication impairments, and consideration of factors outside of stroke when tailoring intervention to the individual. Overall, these findings suggest a continued need for individuation rather than standardization of care, with an eye to both impairment and broader quality of life factors.
中风后的自我认知恢复会对生活质量产生重大影响。然而，存在一种残疾悖论，即残疾与认知恢复并不一致。本研究探讨了中风幸存者对其沟通和行动能力恢复的认知，包括认知到的促进因素和障碍。还研究了失语症患者（PWA）和非失语症患者（PWOA）经历之间的潜在差异，以探讨沟通障碍对恢复体验的影响。对17名成年中风患者在住院康复出院3个月后进行了半结构化访谈。使用主题内容分析法对访谈记录形式的定性数据进行了分析。参与者主要从找词困难和语言表达缓慢方面描述了他们的沟通恢复情况；他们从行走能力、辅助设备的使用或参与中风前活动的能力方面描述了行动能力的恢复情况。在以下方面描述了恢复的促进因素：（1）家庭参与，（2）康复服务和专业人员，（3）个人因素，以及（4）自力更生的需求。在以下领域表达了障碍：（1）身体困难，（2）沟通困难，以及（3）心理困难。本研究的主要发现包括：认知到对高强度康复的需求、对有沟通障碍的中风幸存者家庭更早实施沟通伙伴培训，以及在为个体量身定制干预措施时考虑中风以外的因素。总体而言，这些发现表明持续需要个体化而非标准化护理，同时关注损伤和更广泛的生活质量因素。
