How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration

Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated. Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes. Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of “decision-making” except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals’ communication style influences engagement in decision making. PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement.IMPLICATIONS FOR REHABILITATIONPeople living with MND (plwMND) perceive they have few clinical decisions to make and viewed this process as “accepting a recommendation”, rather than “making a decision” although early gastrostomy placement is the exception with considerable deliberation evident.Specialist multidisciplinary clinic advice is especially helpful for plwMND without dysphagia (swallowing problems) when considering early gastrostomy placement.Communication impairment may be a barrier to involvement in healthcare decisions and extra support to remain engaged is required.Some plwMND choose not to involve others in their decisions, and patients/families with medical or scientific backgrounds are more likely to collaborate with each other outside the context of clinic appointments. People living with MND (plwMND) perceive they have few clinical decisions to make and viewed this process as “accepting a recommendation”, rather than “making a decision” although early gastrostomy placement is the exception with considerable deliberation evident. Specialist multidisciplinary clinic advice is especially helpful for plwMND without dysphagia (swallowing problems) when considering early gastrostomy placement. Communication impairment may be a barrier to involvement in healthcare decisions and extra support to remain engaged is required. Some plwMND choose not to involve others in their decisions, and patients/families with medical or scientific backgrounds are more likely to collaborate with each other outside the context of clinic appointments.

运动神经元病（motor neurone disease, MND）的医疗决策核心聚焦于症状管理与生活质量提升。决策过程可能受个体信息接收方式、决策风格及疾病症状影响。本研究从运动神经元病患者（people living with motor neurone disease, plwMND）的视角出发，对其医疗决策展开探索，旨在明确影响其参与医疗决策的各类因素。

研究采用半结构化访谈（semi-structured interview）法，共访谈19名运动神经元病患者与15名照护者，并对访谈数据进行归纳分析，以识别并提炼相关模式与主题。

数据分析共识别出6大核心主题：决策维度、选择机遇窗口、决策内在影响因素、决策外在影响因素、不确定性下的规划，以及沟通为核心。多数参与者并未意识到自身存在"决策"过程，仅在考虑早期胃造瘘置管术（gastrostomy placement）时例外。信息告知需在确保患者获得充分信息与避免信息过载之间寻求平衡。沟通障碍会影响患者的决策参与度，医疗人员的沟通风格亦会对患者的决策参与产生影响。运动神经元病患者认为，自身可自主选择的临床决策寥寥无几，因疾病症状与临床表型已决定了必要的干预措施。患者将沟通障碍视为参与决策的阻碍，并表示需要额外支持以维持其决策参与度。

康复干预启示
运动神经元病患者普遍认为自身可自主选择的临床决策极少，且将决策过程视为"接受推荐方案"而非"主动做出决策"，仅早期胃造瘘置管术是例外，此场景下患者会进行大量权衡与思考。
专科多学科门诊（multidisciplinary clinic）咨询尤为有益，针对尚未出现吞咽障碍（dysphagia，吞咽困难）的运动神经元病患者，在考虑早期胃造瘘置管术时尤为适用。
沟通障碍可能成为患者参与医疗决策的阻碍，需为其提供额外支持以维持决策参与度。
部分运动神经元病患者选择不让他人参与自身决策；具备医学或科学背景的患者/家属，更倾向于在门诊就诊之外的场景下相互协作。

运动神经元病患者普遍认为自身可自主选择的临床决策极少，且将决策过程视为"接受推荐方案"而非"主动做出决策"，仅早期胃造瘘置管术是例外，此场景下患者会进行大量权衡与思考。
专科多学科门诊咨询尤为有益，针对尚未出现吞咽障碍的运动神经元病患者，在考虑早期胃造瘘置管术时尤为适用。
沟通障碍可能成为患者参与医疗决策的阻碍，需为其提供额外支持以维持决策参与度。
部分运动神经元病患者选择不让他人参与自身决策；具备医学或科学背景的患者/家属，更倾向于在门诊就诊之外的场景下相互协作。