Academic Geriatric Medicine, Faculty of Medicine, University of Southampton, Southampton, United Kingdom.
National Institute for Health Research Applied Research Collaboration, Wessex, United Kingdom.
PLoS One. 2022 Oct 26;17(10):e0276588. doi: 10.1371/journal.pone.0276588. eCollection 2022.
Falls are common in Parkinson's disease, and a recognised research priority. Falls lead to physical and psychological morbidity in people with Parkinson's disease and their caregivers, however, those with cognitive impairment/ dementia and caregivers have often been excluded from previous studies. This qualitative study explored how people with Parkinson's disease and their family caregivers understood and experienced falling and healthcare services relating to falls prevention and management.
A varied and purposive sample of 20 people with Parkinson's disease (40% confirmed or suspected cognitive impairment/ dementia) and 18 caregivers took part in semi-structured interviews. Eight people with Parkinson's disease and their caregivers were interviewed as a dyad, 22 participants were interviewed alone. Interviews were analysed through inductive thematic analysis.
Four themes were developed: (i) struggling with thoughts and feelings about falling, (ii) recognising and managing risks surrounding falling, (iii) navigating health and care provision for falling, and (iv) changing as a couple due to falling. Different aspects of falls provoked a range of negative emotions and a variety of coping strategies were adopted. Falls and trying to avoid falls burdened a couple in a number of ways; beyond physical health they also affected functioning, physiological wellbeing, and relationships. Dyads analysed falls to understand their aetiology and described working together to manage them. This often happened in the absence of adequate support and advice with little involvement of healthcare professionals. When cognitive impairment/ dementia was present this brought additional challenges to falls management, with caregivers taking on a greater and more frustrating role.
Dyads required relevant falls-related information and the difficulties associated with cognitive decline should be recognised by researchers and healthcare professionals. Dyads required support in attributing reasons for falls, and increased awareness of healthcare professionals' different roles to improve patient- professional communication and facilitate patient-centred care.
跌倒在帕金森病中很常见，也是一个公认的研究重点。跌倒会给帕金森病患者及其照顾者带来身体和心理上的发病和痛苦，然而，以前的研究往往排除了认知障碍/痴呆患者及其照顾者。这项定性研究探讨了帕金森病患者及其家属照顾者如何理解和体验跌倒以及与跌倒预防和管理相关的医疗保健服务。
采用多种有目的的抽样方法，选取了 20 名帕金森病患者（40%为确诊或疑似认知障碍/痴呆）和 18 名照顾者参与半结构化访谈。8 名帕金森病患者及其照顾者作为一个小组接受了访谈，22 名参与者单独接受了访谈。访谈通过归纳主题分析进行分析。
得出了四个主题：（一）努力理解和应对跌倒的想法和感受；（二）识别和管理跌倒相关风险；（三）为跌倒问题寻求医疗保健服务；（四）因跌倒而改变。跌倒的不同方面引发了一系列负面情绪，患者和照顾者采取了各种应对策略。跌倒和避免跌倒给夫妻双方带来了许多负担，除了身体健康，还影响了他们的功能、生理健康和关系。患者分析跌倒的原因并共同努力管理，通常在缺乏足够的支持和建议以及医疗专业人员很少参与的情况下进行。当存在认知障碍/痴呆时，这给跌倒管理带来了额外的挑战，照顾者承担了更大、更令人沮丧的角色。
患者需要相关的跌倒相关信息，研究人员和医疗保健专业人员应认识到与认知能力下降相关的困难。患者需要支持来归因跌倒的原因，提高医疗保健专业人员不同角色的认识，以改善医患沟通并促进以患者为中心的护理。
