Speech Versus Speaking: The Experiences of People With Parkinson's Disease and Implications for Intervention

Abstract

Purpose In this project, we explore the experiences of people who report speech changes associated with Parkinson's disease as they describe taking part in everyday communication situations and report impressions related to speech treatment. Method Twenty-four community-dwelling adults with Parkinson's disease took part in face-to-face, semistructured interviews. Qualitative research methods were used to code and develop themes related to the interviews. Results Two major themes emerged. The first, called “speaking,” included several subthemes: thinking about speaking, weighing value versus effort, feelings associated with speaking, the environmental context of speaking, and the impact of Parkinson's disease on speaking. The second theme involved “treatment experiences” and included subthemes: choosing not to have treatment, the clinician, drills and exercise, and suggestions for change. Conclusions From the perspective of participants with Parkinson's disease, speaking is an activity requiring both physical and cognitive effort that takes place in a social context. Although many report positive experiences with speech treatment, some reported dissatisfaction with speech drills and exercises and a lack of focus on the social aspects of communication. Suggestions for improvement include increased focus on the cognitive demands of speaking and on the psychosocial aspects of communication.

<p>Voice treatment in Parkinson’s disease: patient perspectives</p>

“…In general terms, pwPD appear positive about SLT and/or voice treatment. [54][55][56]62,64,65,78 However, it seems as though emotional factors and long-term maintenance issues are rarely addressed in current treatment programs. 54,56 Similarly, practical issues such as fatigue related to traveling to sessions, treatment cost, and waiting list times are rarely considered.…”

“…52 People experience dysarthria differently, and personal context (including coexisting physical disability) is important in deciding the nature (and delivery) of treatment. 28,50,53,54 Yorkston et al 55 identify five important themes to consider in treatment for pwPD: (1) the difficulty of thinking about how to speak as well as what to say (thinking about speaking); (2) fatigue related to trying to "make the unconscious conscious" (weighing value vs effort); (3) expressions of frustration, embarrassment, and loss (feelings about speaking); (4) the distracting effect of PD on the other person (people and places); (5) waiting until medication takes effect to talk (PD and speaking). Spurgeon et al 56 describe four further considerations: (1) emotional reactions (eg, frustration, embarrassment, lack of confidence, anxiety); (2) physical impact (eg, fatigue, breathing, and swallowing); (3) practical aspects (eg, cost of treatment, waiting times), and (4) expectations about treatment (met vs unmet expectations).…”

“…Important contributions emerge when patients and spouses are asked directly to give their opinions through interviews and surveys. 55,56 When the views of 24 community dwelling pwPD were sought regarding their communication experiences, five subthemes emerged including: difficult to think about how to speak as well as what to say (thinking about speaking); fatigue related to trying to make the unconscious conscious (weighing value vs effort); expressions of frustration, embarrassment, and loss (feelings about speaking); the distracting effect of PD on the other person (people and places); waiting until the PD pills take effect to talk (PD and speaking). 55 Regarding voice treatment and/or SLT, pwPD have reported positive comments in studies.…”

“…55,56 When the views of 24 community dwelling pwPD were sought regarding their communication experiences, five subthemes emerged including: difficult to think about how to speak as well as what to say (thinking about speaking); fatigue related to trying to make the unconscious conscious (weighing value vs effort); expressions of frustration, embarrassment, and loss (feelings about speaking); the distracting effect of PD on the other person (people and places); waiting until the PD pills take effect to talk (PD and speaking). 55 Regarding voice treatment and/or SLT, pwPD have reported positive comments in studies. 54,56,64 However, since the focus of the above studies was to identify areas of potential improvement (rather than what SLT intervention is working well for pwPD), there is little elaboration in the studies regarding what pwPD and or carers found helpful.…”

“…Studies that have focussed specifically on pwPD perspectives provide valuable insight into the issues for pwPD embarking on a rehabilitation journey, and how SLT intervention could address these concerns. 2,33,[54][55][56] Using a survey approach, Miller et al 2 reported on 168 pwPD and 47 carers views regarding SLT service provision relating to communication and swallowing. Their goal was to ascertain the issues that were a priority for attention for pwPD (those who had received an SLT referral, and those who had not), the methods of delivery and organization, and the level of support that might be favored.…”