PDF(Pubmed)
Abstract：
BACKGROUND: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness.
METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis.
RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care.
CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants\' service provision which were working, the narratives pointed to future directions services might move in.
METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis.
RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care.
CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants\' service provision which were working, the narratives pointed to future directions services might move in.
摘要：
背景：生活在一起的人，或者照顾某人，在获得诊断并尝试获得适当支持时，罕见形式的痴呆症可能会遇到问题。这会影响他们的健康，生活质量,社会关系和就业状况。本研究利用基于艺术的叙事方法来探索这些经历的个人经历，同时探索如何，在讲述他们的故事时，那些受罕见痴呆症影响的人可能会调用，并将他们的故事与，围绕痴呆症和疾病的更广泛的文化叙事。
方法：通过视频会议软件与参与者进行了半结构化访谈（N=27），生活在一起,或者照顾某人，一种罕见的痴呆症.参与者使用线条图来描绘他们从最初的症状到现在的旅程，然后是提示口头叙述他们的经历。所有采访笔录和线条图都经过了叙述分析。然后对四套成绩单和图纸进行了更深入的分析。
结果：分析揭示了护理伙伴和有诊断的人所遇到的斗争，同时导航一个并不总是了解他们需求的健康和社会护理系统。这通常会导致个人感到孤立和缺乏支持。帐户还描述了该过程带来的身份挑战。诊断的时刻也是在复杂的光线中绘制的。个人在获得理解时找到了安慰，但在认识到即将到来的挑战时感到恐惧。参与者将自己的说法与主流文化叙事相对照，围绕对认知障碍和痴呆症的良好支持，同时也展示了他们在追求正确护理方面的影响力。
结论：使用线条画，除了叙事采访，允许参与者讲述复杂的，有时不合时宜，关于困难经历的故事，同时也在反思，并附加意义，他们。这些故事突显了医疗保健服务方面的紧迫差距，并揭示了个人为改善这些问题而采取的各种集体行动。最后,在对参与者提供服务的一些要素进行建模时，这些叙述指出了服务可能进入的未来方向。
方法：通过视频会议软件与参与者进行了半结构化访谈（N=27），生活在一起,或者照顾某人，一种罕见的痴呆症.参与者使用线条图来描绘他们从最初的症状到现在的旅程，然后是提示口头叙述他们的经历。所有采访笔录和线条图都经过了叙述分析。然后对四套成绩单和图纸进行了更深入的分析。
结果：分析揭示了护理伙伴和有诊断的人所遇到的斗争，同时导航一个并不总是了解他们需求的健康和社会护理系统。这通常会导致个人感到孤立和缺乏支持。帐户还描述了该过程带来的身份挑战。诊断的时刻也是在复杂的光线中绘制的。个人在获得理解时找到了安慰，但在认识到即将到来的挑战时感到恐惧。参与者将自己的说法与主流文化叙事相对照，围绕对认知障碍和痴呆症的良好支持，同时也展示了他们在追求正确护理方面的影响力。
结论：使用线条画，除了叙事采访，允许参与者讲述复杂的，有时不合时宜，关于困难经历的故事，同时也在反思，并附加意义，他们。这些故事突显了医疗保健服务方面的紧迫差距，并揭示了个人为改善这些问题而采取的各种集体行动。最后,在对参与者提供服务的一些要素进行建模时，这些叙述指出了服务可能进入的未来方向。
