The evaluation of a conversation treatment program for people with Parkinson's and their partners.

RESEARCH PLAN Participants Data will be collected from 8-12 dyads (people with Parkinson’s and their partners), who will participate in four group therapy sessions held on a weekly basis. In between week one and week two, each dyad will also receive an individual therapy session with the speech pathologist to identify the specific barriers they face during conversations and to discuss the specific strategies they could use to support their conversations. Participants with Parkinson’s who express an interest in taking part in the study, will be provided with information about the study. If they indicate that they do wish to take part, they will be asked sign the consent form. Participants with Parkinson's and their partners/spouses will be recruited. For this study, a communication partner is defined as a partner/spouse who interacts with the person with Parkinson’s daily. Consent process Participants with Parkinson's and partners of people with Parkinson's who have been invited to participate will have the project explained to them via phone call by the HDR student. It will be made clear to them that participating is voluntary and they can choose not to take part. Once they have expressed an interest in taking part, the Telephone Interview of Cognitive Status (TICS - M) (de Jager et al., 2003) will be used with each participant with Parkinson’s via phone call, to assess their cognitive ability to consent to participation in the study. Participants will be excluded if they obtain a score of 18 or less, which is reported to be a sensitive indicator of mild cognitive dysfunction (de Jager et al., 2003). The 'Hoehn and Yahn' classification as a quick indicator of general Parkinson's severity will also be completed with each participant with Parkinson’s via phone call. Participants will complete a single question that asks them to rate their Parkinson's symptoms in accordance with the Hoehn and Yahr scale (Hoehn & Yahr, 1967). The scale is widely used to assess the severity and progression of Parkinson's disease symptoms. It categorises individuals into one of five stages based on the severity of their motor symptoms. The scale will be slightly adapted for use in a self-report questionnaire format. Individuals will rate their Parkinson’s motor symptoms from 0 (no symptoms) to 5 (wheelchair bound, or bed ridden unless supported). Higher scores indicate more severe Parkinson's motor symptoms. The Hoehn and Yahr scale has high convergent validity and is strongly correlated with other Parkinson's symptom measures (Martignoni et al., 2003). In addition to a verbal description of the project, all participants will be provided with an information sheet. They will be given the opportunity to ask questions about the study and also given the opportunity, if they wish, to discuss the study with their family before consenting to take part. Once participants have read the information sheet and been given the opportunity to ask questions, they will be given a consent form to sign. They will not participate in the study until the consent form has been signed. All participants will be provided with a copy of their consent form on request. Design The study will be trialled using a repeated measures experimental design and evaluated using a mixed-methods approach; quantitative behavioural and perceptual measures will be used in combination with qualitative data. If the project is unable to recruit the full number of participants, the results of this study may be presented in a case series format. Method People with Parkinson's and partners of people with Parkinson's who are deemed eligible to participate will be invited to take part in the treatment program. The study will use a repeated measures experimental design. Before the treatment program, two baseline assessments will be conducted (Times 1 and 2), separated by 4 weeks, to assess for change when no treatment is given. The assessments will then be repeated immediately after the treatment program (Time 3). UPDATED: As requested by the participants enrolled in this current study, a second post therapy assessment two months after the therapy program has concluded was added. This addition was proposed because we would like to assess if the participants have maintained their therapeutic skills and goals two months post therapy. An updated 'Consent form' which reflects this change will be provided to all the current participants to obtain their consent for an additional post-therapy assessment two months after the therapy program has concluded. If any participant does not provide consent to complete an additional assessment, we will document that this is missing data. The design will therefore compare change when treatment is provided versus when no treatment is provided. All participants will receive the treatment program between Times 2 and 3. To accommodate for the availability of participants, the treatment program will be completed within 2-3 sets of groups aiming for four dyads in each group. This group therapy approach based on a common theme of interest, is consistent with the approach that people with Parkinson’s and their partners identified to be most useful to support their conversations during the previous co-design phase (phase 2a) of this PhD project. The treatment program for each group will be delivered once a week for four weeks, each session lasting 90 minutes. All tasks will be administered by the HDR student (an experienced speech pathologist), guided by the protocol developed in consultation with people with Parkinson’s and their partners in the previous codesign phase. The treatment program will commence with a group session where participants get to know each other, and the speech pathologist introduces and explains the treatment program. Between week one and two, the speech pathologist will meet individually with each dyad to develop individual goals that they would like to achieve through this program using the conversation strategies explained to them by the speech pathologist. During the next three group therapy sessions, participants will practice their target conversation strategies within a group interaction about a common topic of interest (e.g., sports, music etc.). For the group therapy sessions, examples of conversation strategies that will be used during treatment for the person with Parkinson's include: 1) Intentionally speaking louder with added effort. 2) Prepare for the conversation by wearing hearing aids, taking medication and choosing a time when one is not fatigue. 3) Manage environmental factors such as reduce background noise. 4) Prepare conversation starters and use open ended questions. Examples of conversation strategies that will be used during treatment for the partner include: 1) Request a clarification if required. 2) Use short and succinct responses. 3) Use indirect prompts and feedback appropriately. 4) Show empathy towards the speaker. 5) Ensure both speaker and lister are in the same room and facing each other. Strategies used to monitor adherence to the intervention include session attendance checklists, a reflection form to be filled at the end of each session on their reflections about the activities completed. Participants will also write their feedback about the homework they completed. throughput the past week. The treatment effect will be assessed using both quantitative and qualitative measures. Quantitative measures will assess the impact of dysarthria on their quality of life, change in overall communicative effectiveness, and the degree of participation in conversations for people with Parkinson’s. The partner's skill to support conversations will also be measured. Conversation analysis (CA) (Goodwin & Heritage, 1990) of a short audio recording of the person with Parkinson’s and their CP conversing with each other on a regular topic will be completed. The speech pathologist will also work with each couple to develop individual goals that they will target during the conversation therapy program. Goal attainment scaling (GAS) (Turner-Stokes, 2009) will be used to quantify the achievement (or otherwise) of each goal. A qualitative analysis of consumer perspectives about taking part in the treatment program, and their perceived changes in conversations post treatment will be completed using an interview guide and a six-item questionnaire adapted from similar prior studies (Cocks et al., 2013; Kearns et al., 2020; Worrall et al., 2011). (The previous co-design phase was not registered on the ANZCTR. A brief overview of what was involved in this co-design phase include: - Three people with Parkinson's and their partners (therefore, total six participants) attended six weekly workshop sessions with the HDR student who is an experienced Speech Pathologist. Each session was 1.5 hours long and spread over six weeks. - Participants were presented with example program components used to support conversations with people with Parkinson's as well as other neurological conditions. They were invited to provide feedback and suggest their preferences to support conversations in the Parkinson's population. - Participants together with the Speech Pathologist then designed the group therapy approach, frequency, duration, and materials for activities which will be trialled in this suggested phase of this project.)