The Parkinson’s disease Getting Out and Active Living (PD-GOAL) program: The effect of behavioural activation therapy on apathy and depression in people with Parkinson’s disease (PD)

This study will pilot a new psychological intervention, the Parkinson’s disease Getting Out and Active Living (PD-GOAL) program. Participants will be randomly allocated to receive the PD-GOAL program in one of two rounds. Those allocated to the intervention condition will receive the PD-GOAL program in Round 1 while those allocated to the waitlist control condition will receive the PD-GOAL program in Round 2, approximately 2-months later. The intervention will be delivered over a period of 6 weeks in total. The PD-GOAL program is a 6-session hybrid-telehealth intervention that aims to alleviate symptoms of depression and apathy by identifying and promoting engagement in meaningful and enjoyable activities. The PD-GOAL program is grounded in principles of behavioural activation, an evidence-based, psychological therapeutic approach for depression that has been validated by the American Psychological Association. Together with people living with PD and their support people, the Research Team previously adapted and co-designed the PD-GOAL program to be suitable for people living with PD in Australia. People with PD and their support people were asked to provide their feedback on the design of the study, the delivery mode of the PD-GOAL program, the involvement of support people, and the clarity, appropriateness and design of the program materials. Group discussions were conducted and feedback was provided over three 2-hour workshops, which were delivered over a period of 5 weeks. As part of the program, an initial group session will take place between the trained program facilitators (i.e., Program Coaches), participants, and their support people (if desired). No more than 10 participants (not including their support people) will attend session 1 either in person or via video call. In this session (1.5-2 hours), participants will learn about (1) mood and motivation changes in PD, (2) the rationale behind the program, (3) tracking their baseline activities and (4) identifying activities that would be enjoyable and important to them. This content will be delivered via PowerPoint slides, short videos, and guided group discussions. Participants will also be provided with two program booklets (a guidebook and workbook). Over the following week, they will be asked to record the activities they currently do each day (i.e., tracking their baseline activities) in the workbook and to reflect on their levels of mood and motivation. They will also be asked to complete a worksheet about the areas of their life they might like to plan activities for (i.e., activities to improve relationships). These between-session workbook tasks are expected to take 15-30 minutes per week to complete, over the 6 weeks of the program. Over the next 5 weeks, participants will then receive weekly one-to-one calls from their assigned Program Coach who will personalise the program for them. The first call (session 2, 30-45 minutes) will be scheduled for one week after session 1 and will involve discussing participants' baseline activity levels and possible activities that they may be interested in engaging in over the course of the program. One or several activity goals will be selected and scheduled, and the participant will be encouraged to try to complete this activity over the following week. Scheduled activities will be personalised to each participant and their own set of circumstances, abilities, and interests. Over the next four weeks of the program (sessions 3-6), participants will receive weekly ‘check-in’ calls (via phone or video call) from their Program Coach to discuss how they went with their activity goal/s and to schedule activities for the following week. They will also be supported to troubleshoot and overcome barriers to completing these activities. These calls are expected to last for 15-45 minutes; however, the duration will fluctuate from participant to participant depending on their specific experiences and barriers. Participants also have the option of nominating a support person (i.e., spouse, family member, close friend) to learn about the program and support them through it (if desired). In addition to the weekly calls throughout weeks 2-6 of the program, participants will be asked to read the relevant sections of the guidebook and complete the relevant workbook tasks, which are expected to take approximately 15-30 minutes each week. The time taken to complete the personalised activity goals each week will vary on a participant-to-participant basis. Participants will be encouraged to commit fully to the program and all between-session tasks, but there will be no minimum requirement of time spent. The PD-GOAL program has been designed specifically for this pilot trial. Further details on the design and content of the program booklets will be provided in the form of a scientific journal article to disseminate the pilot trial findings. Feedback on the acceptability and feasibility of the PD-GOAL program will also be incorporated in future updates to the program booklets. The updated program booklets will be made publicly available upon study completion and any final adjustments. Program Coaches will hold an Honours degree in psychology. Program Coaches will be trained in program delivery by two of the investigators, (1) a registered Clinical Neuropsychologist with 10 years’ experience in clinical dementia research and (2) a registered Clinical Psychologist with extensive experience employing behavioural activation with clients and who is currently administering a trial of a behavioural activation program to improve engagement and well-being in older adults. Program Coaches will attend multiple training sessions and will be provided with extensive supporting information to assist. The two investigators may also administer some of the sessions and will be on hand to provide supervision when required. For each week, Program Coaches will refer to the program materials to ensure they cover all the content for that week. They will also ask participants a series of questions during the five weekly calls to record whether or how often participants completed the between session tasks. Answers to these questions will be noted and, with the consent of the participant, their workbook will also be collected and assessed for treatment fidelity.