honeybee

Researchers


Managing Fatigue in People Living with Parkinson`s Disease

Dalhousie University, IC3RG


In this study, we will evaluate the individual form of the Managing Fatigue Program, from the perspective of individuals with Parkinson’s disease (PD) and prepare the program for larger future studies. This research will use questionnaires and group discussions to evaluate the program’s feasibility. Due to the current situation regarding COVID-19, there will be no in-person visits. All measurements and intervention sessions will be conducted using online surveys and video conferencing. Who Can Take Part in the Research Study To match the criteria for this study, you need to be over the age of 18, live in Nova Scotia, have a diagnosis of PD, experience fatigue severe enough to interfere with your daily life, and have access to the internet, an electronic device and a private place for video conferences. To participate, you also need to read and speak English. If you have previously completed this fatigue program, have another condition that causes fatigue (e.g. heart failure, cancer), or have difficulty with concentration, memory or recall skills, you won’t match the needs of the study and we will not ask you to participate.

Your Impact


The proposed study will evaluate the feasibility of Managing Fatigue: The Individual Program in people living with PD for the very first time. If the known beneficial effects of this program extend to the PD population, this research will be the first step of evidence needed to support the integration and implementation of this program into the care of people with PD.

Eligibility Criteria


All genders

At least 18 years old

Live with Parkinson`s disease

Live in Nova Scotia

Experience fatigue in their everyday life.

Have access to an electronic device and internet and a private place for video conferences

Speak and read English.

Study Tasks


we will ask you some questions and conduct some simple tests to be sure you match all the criteria for this study. We will ask you to complete tests that assess your cognitive skills (things like attention, memory and orientation) and level of fatigue.
Once we confirm you match the criteria for the study, you will begin the first round of testing. You will be asked more detailed questions about yourself (gender, age, disease duration, etc), the impact of your fatigue on your life, for example, your sleep, your ability to complete everyday activities, your self-confidence in looking after yourself, and how happy you are with your life. You will be asked to complete these questions online while video conferencing with the researcher. The research team will send you the computer link so you can answer the questions. You will be able to ask the researcher any questions you may have during this time.
Following this visit you will be randomly assigned to one of the two groups in the study. You will not get to choose which group you are in. One group will receive the Managing Fatigue Program, and the other group will not. We will email you a letter to tell you which group you have been assigned to. The group that does not receive the program will receive a manual and be invited to participate in a workshop about the program once the main study has been completed. No matter which group you are in, you should continue receiving your current healthcare services. For research purposes, we will ask you to not share your group allocation with the researcher who does your testings at any stage of the research
If you are in the group who will receive the fatigue program, we will ask you to: • participate in six one-to-one sessions using video conference with an occupational therapist, • complete a short questionnaire after each session (10 questions) and another one after completing all six-sessions (12 questions) by using a computer link that a research assistant will send to you by email. • complete the same questionnaires done at the screening and data collection visit in video conference visits two more times, once after you finish all the sessions and again three months later (approximately 60 minutes each time). You may also be asked to participate in a group discussion, again by video conference, but not everyone will have to do this. We will ask you about this possibility after you finish the 6 sessions. In these group meetings, you will be asked to further discuss your opinions about the program. Each group discussion will take approximately 90 minutes. These meetings will be led by an experienced research assistant. If you are asked to participate in the group discussion, you will be given a separate consent form that includes more information about this part of the study.
If you are in the group that does not receive the program, we will ask you to: • complete the same questionnaires done at the screening and data collection visit two more times, once after six-week and again three months later (approximately 60 minutes each time). After completing the third visit (3 months after the beginning of the study), you will have the opportunity to attend a three-hour virtual workshop that includes the content of the Managing Fatigue Program, including the pre-session activities, in-session activities, and homework. This workshop will be conducted by licensed occupational therapists. You also will receive the manual used in the program by mail.

Ethics


Dalhousie University Health Sciences Research Ethics Board (REB) (2019-4954)

Keywords


Fatigue
Parkinson`s Disease
Occupational Therapy
Self-Management

Activity and Time


Health and Wellness

Clinical Trial

Weekdays, Weeknights, Weekends

9 hours total, 6 sessions

As you know due to the current situation regarding COVID-19, there will be no in-person visits and all the visits and measurements will be conducted using online surveys and video conferencing. There will be two groups in this study. You will be randomly assigned to one of these groups and you will not get to choose which group you are in. One group will receive the Managing Fatigue Program, and the other group will not. The group who do not receive the program will be offered a free workshop and they will receive the program’s manual after completion of the study.

Compensation


$20 Shoppers or Lawtons gift card

Study Address


This study doesn't require any in-person visits. Complete it in the comfort of your own home!

Posting date: Nov 25, 2020

$20 Shoppers or Lawtons gift card