Miller Nick, Noble Emma, Jones Diana, Burn David
Speech language sciences, George VI Building, University of Newcastle, Newcastle-upon-Tyne NE1 7RU, UK.
Age Ageing. 2006 Nov;35(6):614-8. doi: 10.1093/ageing/afl105.
swallowing changes occur from the earliest stages of Parkinson's disease (PD), even in cases asymptomatic for dysphagia. Little empirical evidence exists concerning the individual's own perception of changes, the impact these have on their life and coping strategies to deal with them.
to establish if and how changes in swallowing impact on the lives of people with PD.
in-depth interviews with qualitative analysis of content.
community.
a total of 23 men and 14 women and their carers.
participants were purposively sampled to give a mix of men, women, family circumstances, stage and duration of PD and severity of swallowing symptoms. Individuals were interviewed at home. Interviews were transcribed. Emergent themes were identified and fed back to participants for confirmation and clarification.
two broad themes emerged: (i) effects on swallowing of underlying physical changes, with subthemes of oral-pharyngeal-laryngeal changes, manual changes, effects of fatigue and (ii) psychosocial impact, with subthemes of alterations to eating habits, feelings of stigma, need for social adjustment and carers' issues. Coping strategies could aid swallowing problems but often to the detriment of others in the family through altered demands on preparation and organisation. Presence of significant impact was not necessarily associated with abnormal range scores on objective swallowing assessments.
the psychosocial consequences of the physical changes concerned people most. The importance of the early detection of changes for health and quality of life is underlined.
吞咽变化在帕金森病（PD）的最早阶段就会出现，即使是在没有吞咽困难症状的情况下。关于个体对这些变化的自身感知、它们对生活的影响以及应对策略的实证证据很少。
确定吞咽变化是否以及如何影响帕金森病患者的生活。
采用深入访谈并进行内容定性分析。
社区。
共23名男性和14名女性及其照料者。
通过目的抽样选取参与者，涵盖不同性别、家庭情况、帕金森病的阶段和病程以及吞咽症状的严重程度。在参与者家中进行访谈。访谈内容进行转录。识别出浮现的主题并反馈给参与者以进行确认和澄清。
出现了两个广泛的主题：（i）潜在身体变化对吞咽的影响，包括口咽喉变化、手部变化、疲劳影响等子主题；（ii）心理社会影响，包括饮食习惯改变、耻辱感、社会适应需求和照料者问题等子主题。应对策略有助于解决吞咽问题，但由于对准备和组织的要求改变，往往会对家庭中的其他人造成不利影响。显著影响的存在并不一定与客观吞咽评估中的异常范围分数相关。
身体变化的心理社会后果最令人们担忧。强调了早期发现变化对健康和生活质量的重要性。
