Swales Megan, Theodoros Deborah, Hill Anne J, Russell Trevor
Centre for Research in Telerehabilitation, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
Int J Speech Lang Pathol. 2021 Feb;23(1):70-82. doi: 10.1080/17549507.2020.1739332. Epub 2020 Apr 3.
To investigate people with Parkinson's disease (PwPD): 1) self-reported communication and swallowing difficulties due to Parkinson's disease (PD), 2) participation and psychosocial impacts of these difficulties and 3) experience with and access to speech-language pathology (SLP) services.
A cross-sectional mix-methods survey was conducted using nonprobability, purposive sampling for recruitment. An inclusion criterion was that participants needed to have self-reported communication and/or swallowing changes due to PD. Descriptive statistics and thematic analysis were utilised.
All of the 78 PwPD who participated reported changes to their communication (97%) and/or swallowing (93%). A diverse range of participation restrictions was found in social, recreational, vocational and everyday living activities. Adverse emotional impacts including frustration, loss of self-confidence, depression and isolation were reported due to these changes. Only 59% of our sample had accessed SLP services. The most common reason for PwPD not accessing services was that neither their general practitioner nor neurologist had referred them to SLP. The majority of PwPD wanted to access SLP at some point in the future. Wide variability in the SLP services provided was evident. Most of the PwPD who had received SLP support wanted further ongoing management.
This study provided insight into the everyday impacts of communication and swallowing changes experienced by PwPD, and the gap between service supply and demand.
调查帕金森病患者（PwPD）：1）因帕金森病（PD）自我报告的沟通和吞咽困难；2）这些困难对参与度和心理社会的影响；3）接受言语病理学（SLP）服务的经历和获得途径。
采用非概率、目的抽样法进行横断面混合方法调查以招募参与者。纳入标准是参与者需自我报告因PD导致的沟通和/或吞咽变化。采用描述性统计和主题分析。
参与调查的78名PwPD均报告了其沟通（97%）和/或吞咽（93%）方面的变化。在社交、娱乐、职业和日常生活活动中发现了各种各样的参与限制。由于这些变化，报告了包括沮丧、自信心丧失、抑郁和孤立在内的不良情绪影响。我们的样本中只有59%接受过SLP服务。PwPD未接受服务的最常见原因是他们的全科医生和神经科医生都未将他们转诊至SLP。大多数PwPD希望在未来某个时候获得SLP服务。所提供的SLP服务存在很大差异。大多数接受过SLP支持的PwPD希望得到进一步的持续管理。
本研究深入了解了PwPD所经历的沟通和吞咽变化的日常影响，以及服务供需之间的差距。
