“They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia

The healthcare experience is a multifaceted and varied process, particularly for people living with complex conditions such as primary progressive aphasia (PPA). Different experiences influence pathways through the health system, impacting client outcomes. To our knowledge, no previous studies have directly explored the healthcare experiences of people with PPA and their families. This study aimed to explore the experiences of people living with PPA from the perspective of both the person with PPA and their families during diagnostic and post-diagnostic phases, and to identify factors influencing service access and perceptions of quality of care. The study followed an Interpretive Phenomenological Analysis (IPA) approach. In-depth, semi-structured interviews were completed with three people with PPA and their primary care partner, and two further care partners of people with PPA. Five superordinate themes were identified: characterising the assessment experience, getting a diagnosis, moving beyond the diagnosis, participant interactions with clinicians, and overall service provision. The five superordinate themes comprised 14 subthemes. The study provides preliminary insights into the complexity of the PPA healthcare journey, and the need for increased accessibility of information and supports following diagnosis. The findings inform recommendations for improving quality of care and the development of a PPA service framework or care pathway.

医疗照护体验是一个多维度且充满变数的过程，对于罹患原发性进行性失语症（primary progressive aphasia, PPA）这类复杂病症的群体而言尤为如此。各异的就医体验会影响患者在医疗系统中的就诊路径，进而影响其临床结局。据我们所知，目前尚无研究直接探讨过PPA患者及其家属的医疗照护体验。本研究旨在从PPA患者本人及其家属的视角，探究其在诊断阶段与诊断后阶段的医疗照护体验，并明确影响服务可及性与照护质量认知的相关因素。本研究采用解释现象学分析（Interpretive Phenomenological Analysis, IPA）方法开展。研究共对3名PPA患者及其主要照护者，以及另外2名PPA患者的照护者开展了半结构化深度访谈。研究共提炼出5个主主题：评估体验特征、确诊过程、确诊后阶段、受试者与临床医师的互动情况，以及整体服务供给情况。上述5个主主题共涵盖14个子主题。本研究初步揭示了PPA患者医疗照护历程的复杂性，以及确诊后提升信息可及性与支持服务的必要性。本研究结果可为优化照护质量、构建PPA专属服务框架或照护路径提供参考建议。