Discipline of Speech Pathology, Faculty of Medicine and Health, 4334University of Sydney, Sydney, NSW, Australia.
Discipline of Speech Pathology, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia; School of Psychology and Brain & Mind Centre, 4334 The University of Sydney, Sydney, NSW, Australia.
Dementia (London). 2022 Nov;21(8):2476-2498. doi: 10.1177/14713012221124315. Epub 2022 Sep 2.
Receiving a diagnosis of neurodegenerative disorder is life changing. Primary progressive aphasia is one such disease. Understanding how receiving this diagnosis impacts on individuals may help plan support services. However, limited qualitative research from the perspectives of people with Primary Progressive Aphasia are available for suitable care planning. Current literature primarily focuses on experiences of family members. The present study aims to fill this gap by examining the affective, behavioural, and cognitive experiences of people with Primary Progressive Aphasia.
Semi-structured interviews were conducted with six participants with PPA. A qualitative descriptive approach was used to describe responses from participants on: (i) what they experienced prior to receiving their diagnosis; (ii) their experience of receiving the diagnosis; and (iii) how they were living with their PPA. Verbatim transcripts were analysed using thematic analysis to identify main themes.
Analysis revealed a superordinate theme of Multifaceted Grief with subthemes described in sequence of research questions posed, representing the three phases of Pre-Diagnosis, Time of Diagnosis, and Post-Diagnosis. Themes collectively revealed participants' ongoing experience of loss in dealing with the evolving challenges of Primary Progressive Aphasia. Experiences of loss emerged with descriptions of feelings, thoughts, and limitations in relation to changes imposed by the illness, impacting daily activities and life roles central to participants' pre-diagnosis sense of self.
Participants' affective, behavioural and cognitive reactions to their Primary Progressive Aphasia diagnosis marks the onset of Multifaceted Grief borne of loss of communication and cognition. Participants expressed a need for information regarding a possible Primary Progressive Aphasia trajectory and support to enable a successful transition as their disease progressed. Collaborative engagement between speech pathologists and people with Primary Progressive Aphasia incorporates addressing all levels of the International Classification of Functioning and Health by considering neurological, psychological, and psychosocial experiences of the person with the diagnosis.
诊断出神经退行性疾病会改变生活。原发性进行性失语症就是这样一种疾病。了解这种诊断如何影响个体可能有助于规划支持服务。然而，原发性进行性失语症患者的观点的定性研究很少，因此无法进行适当的护理规划。目前的文献主要集中在家庭成员的经历上。本研究旨在通过检查原发性进行性失语症患者的情感、行为和认知体验来填补这一空白。
对 6 名 PPA 患者进行了半结构化访谈。采用定性描述方法，描述参与者对以下问题的回答：（i）在获得诊断之前他们经历了什么；（ii）他们对诊断的体验；（iii）他们如何与 PPA 一起生活。使用主题分析对逐字记录进行分析，以确定主要主题。
分析显示，多层面悲伤是一个上位主题，子主题按照研究问题的顺序描述，代表了诊断前、诊断时和诊断后三个阶段。这些主题共同揭示了参与者在应对原发性进行性失语症不断演变的挑战时，持续面临的丧失体验。丧失的体验出现在与疾病引起的变化相关的感觉、想法和限制的描述中，影响了日常生活活动和生活角色，这些角色是参与者在诊断前自我意识的核心。
参与者对原发性进行性失语症诊断的情感、行为和认知反应标志着多层面悲伤的开始，这种悲伤源于沟通和认知的丧失。参与者表示需要有关原发性进行性失语症可能轨迹的信息，并需要支持，以使其在疾病进展时能够成功过渡。言语病理学家与原发性进行性失语症患者之间的协作参与，通过考虑到患者的神经、心理和社会心理体验，将国际功能、残疾和健康分类的所有层面都纳入考虑范围。
