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February 2018

 You are invited to participate in a study entitled “Family Perspectives on Assisted Dying.”

Who we are:
We are a team of four researchers from the University of Toronto – two are student occupational therapists and two are professors at the university.

Why we are doing this:
Assisted dying is now an option for individuals eligible in Canada. The change in the law is intended to offer more options, but it may also make some people feel more concerned. There are checks and balances in place to try to prevent any improper use of assisted dying and to promote informed decisions made by the individual who is considering assisted dying. 

While some researchers have examined family members’ support of assisted dying, we know very little about the attitudes and perspectives of family members regarding this issue and no research has been conducted to date in Canada. The purpose of this study is to gain further insight into the attitudes, perspectives and experiences of family members now that assisted dying is a legal option.

The findings of this study will contribute to recommendations for supporting both patients and their family members during the dying process.

Who we are asking:
We are asking family members (including close personal friends) who are or who have been involved in the care of individuals with a grievous and irremediable condition to participate in this study. The care recipient must be or have been eligible for health services in Canada. The care recipient does not or did not need to be eligible for assisted dying under the current law in Canada. 

What we are asking:
This study asks for your thoughts on the how the legalization of assisted dying affects:
1) Your role in the care of someone who may or may not be considering a legal request for assisted dying;
2) The impact of this role on your health and well-being;
3) Your potential needs for support from the healthcare and social systems.

We will also be asking some general information about you (for example, age and education), but we will not be asking for information that can identify you. 

How we’re asking:
We will be asking you to complete a telephone interview for this study by May 2018. We will need to arrange to contact you for the interview, but will delete your contact details once it is complete. We will record the interview anonymously- without any identifying details- so that we can transcribe it. We will ask you at the end of the interview if you still feel or wish your responses to be included – you can then ask to have it deleted if you wish for any reason.

The interview recording will be kept for transcription and then deleted. As we will not have any way to identify each recording, or the transcripts, there will be no way to delete it once it is added to the other responses. Any potentially identifying details will be de-identified or removed.

You also have the option to complete an online survey in place of the telephone interview. We are using a survey system called Survey Monkey. The survey asks for no identifying information from you – only some general demographics. We ask that you take care not to include any identifying details in the open comments sections. If any identifying details are included, we will omit them from any reports/publications/ presentations about this study.

The survey will be open until the end of May 2018. If you wish to withdraw from the survey once you have started it, you can simply click ‘discard’ at any time – this will remove any responses you have entered. Once you click ‘submit’, your responses cannot be removed.  

To go to the survey, you can click on the web link below. The first page of the survey will repeat this letter – you can skip it and go to the second page where you will find the consent page.

 https://www.surveymonkey.com/r/MAIDfamilycaregivers

Please feel free to forward this invitation to any others who are or have been in a position similar to you.

If you have any questions about the survey, please do not hesitate to ask either of the MSc student researchers: 

Simon McKendry (s.mckendry@mail.utoronto.ca) or Kyle DIab (k.diab@mail.utoronto.ca);

or the professors:

Kevin Reel (kevin.reel@utoronto.ca) or Jill Cameron (jill.cameron@utoronto.ca).

This project has been approved by the University of Toronto Health Sciences Research Ethics Board. If you have any questions about your rights as a participant you may contact them via the Office of Research Ethics: ethics.review@utoronto.ca  or  416-946-3273.

Thanks for considering participating in this survey.

  • Simon McKendry, MSc (OT) candidate,
    University of Toronto
  • Kyle Diab, MSc (OT) candidate,
    University of Toronto
  • Kevin Reel, OT Reg. (Ont.)
    Assistant Professor (status only), Occupational Science and Occupational Therapy
    Faculty, Global Institute for Psychosocial, Palliative and End-of-life Care
    Member, Joint Centre for Bioethics
    University of Toronto
  • Jill Cameron, PhD
    Associate Professor, Occupational Science and Occupational Therapy
    University of Toronto

Caregiver Resilience and Coping Resources

Participants Needed

For a study examining the influence of self-efficacy and language on caregivers’ resilience and the association between caregivers’ attitude towards social supports and resilience.

Download a PDF Flyer for more details about the study.

Participant Requirements

  • Informal caregivers for a person requiring assistance with one or more activities of daily living.
  • Caregivers must be older than 18 years of age.
  • Monolingual and bilingual caregivers.
  • Residing in North American continent.
  • Complete questionnaire through one of three methods: online, mail-in form or through in-person interview.
Participants have a chance to win one of five $10 Tim Horton’s gift cards.

Download the mail-in form.

For more information or to participate in this study, contact:
Joanna at joanche8@my.yorku.ca or Tonino at tonino8@my.yorku.ca

Predict Parkinson’s studies

The Nova Scotia Health Authority, Dalhousie University and IWK Health Centre, are seeking two sets of participants to investigate better ways of detecting Parkinson’s disease.

Participants will take a smell identification test (scratch and sniff), which can be mailed to your home. Some participants will have the option to have a brain MRI. If you are chosen to have an MRI, compensation for your time will be provided.

Requirements include:

  • You are between the ages of 40 and 65.
  • You are in good physical health.
  • For one set of participants: You DO have a first degree relative (parent, sibling or child) who has been diagnosed with Parkinson’s disease.
  • For a second set of participants: You DO NOT have a first degree relative (parent, sibling or child) who has been diagnosed with Parkinson’s disease.

More information for participant with a first-degree relative with Parkinson’s.

More information for participant with a first-degree relative without Parkinson’s.

If you are interested in participating, or would like more information, contact: pdadstudy@gmail.com or call 902-473-3147. Please provide your name, phone number and the best time for us to reach you.

Fall risk factors in Parkinson’s disease

Physical therapy researchers from the College of Rehabilitation Sciences at the University of Manitoba are conducting a study to evaluate fall risk factors in individuals with Parkinson’s disease (PD).

The study will evaluate participants’ ability to balance and walk while performing various mental tasks (i.e. dual-tasking.) For example walking while avoiding obstacles or while searching and tracking moving visual targets.

Click here for one-page summary.

Requirements include:

  • Individuals with Parkinson’s disease, between the ages of 55- 70.
  • Can walk independently at least 50 meters with, or without, a cane.
  • Without any musculoskeletal impairment or uncontrolled cardio-vascular condition which prevent you from walking on a treadmill for periods of 2-4 minutes.
  • Without any visual impairment that would limit your ability to watch and follow various visual images on a TV or computer monitor.

If you are interested in participating, please contact:

Mayank Bhatt
431-998-2047
bhattm@myumanitoba.ca

Dr. Tony Szturm
204-787-4794
tony.szturm@umanitoba.ca

Evaluation of Parkinson’s disease questionnaire used by speech pathologists

The University of Sydney in Australia is conducting an online survey of Registered Occupational Therapists to examine the perceived knowledge, attitudes, behaviours, and barriers of occupational therapists regarding the use of psychological strategies in their practice with clients living with Parkinson’s disease.

This study involves the evaluation of a disease-specific questionnaire that assesses the physical and social effects of PD on speech, swallowing, communication. Determining the appropriateness and accuracy of this questionnaire will help health professionals to better understand the needs of persons with PD in order to provide appropriate care and support.

All potential participants will be invited to go to the questionnaire’s website. Upon opening the website, the participant will be asked to read a Participation Information Statement and to provide consent to proceed with the questionnaire. The questionnaire will take approximately 25 to 30 minutes to complete. The information gathered will be used to evaluate the appropriateness and accuracy of the questionnaire.

If the participant leaves their email address, we will contact them after 2 weeks and will ask them to complete a shorter questionnaire with fewer questions. This will take them approximately 10 minutes to complete.

While the study is primarily being conducted in Australia, the validation of the questionnaire is for a general English-speaking population. The study’s aim is on improving healthcare services and providing better resources for assessing Speech and communication symptom severity in Parkinson’s patients in Australia, but we hope to generalize this improvement for patients across English-speaking countries.

Click here for a 3-page summary of the study (PDF)

Requirements include:

  • Aged 18 years or over
  • Diagnosis of Parkinson’s Disease
  • English-speaking
  • Ability to complete the questionnaire

Participants are asked to complete an online, 30-minute or less, survey at https://www.surveymonkey.com/r/ROMPstudy

Toronto Western Hospital looking into the build-up of iron in the brains of people with Parkinson’s

Researchers at Toronto Western Hospital are looking for participants for the SKY study (Study of Parkinson’s Early Stage). They are taking a new approach to treating Parkinson’s disease by looking at the build-up of iron in certain regions of the brain among people with Parkinson’s disease. It is not known whether this build-up of iron is causing harm to the brain cells, or whether removing it may improve the motor symptoms of this disease or slow its progress. The SKY clinical study aims to address these questions.

Click here for a one-page summary of the study (PDF)

Requirements include:

  • Male or female aged 18 to 80 years
  • Body weight more than 60 kg, but less than 100 kg.
  • Parkinson’s disease newly diagnosed in the past three years.
  • Currently taking antiparkinsonian medication

If you are interested, please call: 416-603-5800 x5234

Biomedical technology for individuals with Parkinson’s disease

Researchers at Simon Fraser University are inviting people with Parkinson’s disease to participate in a research study to examine the effect of Galvanic Vestibular Stimulation (GVS) on gait.GVS is a process of sending specific electric messages to a nerve in the ear, by placing non-invasive electrodes behind the ear.Electroencephalography (EEG), Electromyography (EMG), accelerometry, and simulated walking environment system will be used for data collection.

Click here for one-page summary of the study.

Requirements include:

  • Resident of Metro Vancouver area
  • Age between 35-85 years
  • Diagnosed with Parkinson’s disease or Parkinsonism

Study will run for approximately 2 hours and participant will receive $25 for time compensation.

If you are interested, please contact:

Eunice Kuatsjah
ekuatsja@sfu.ca
(778) 385-6810

Bindu Mohan
bindu_mohan@sfu.ca
250-462-3879

Understanding the neural correlates of steering of gait in Parkinson’s disease with freezing of gait

Researchers in the dept. of Kinesiology at McGill University are conducting a study to determine the effects of Parkinson’s disease with, and without, freezing of gait on the activation of the brain regions involved in turning and changing direction while walking.

Participants would need to make three, two-hour visits to the lab located beside the Montreal Neurological Institute at McGill University (downtown campus) at 475 Avenue Des Pins (parking available.) You will be asked to complete two different walking exercises in combination with brain imaging.

Requirements include:

  • Person with Parkinson’s disease
  • Able to walk independently (without use of walking aid) for 40 minutes.

If you are interested in participating, or would like more information, contact Trina Mitchell at trina.mitchell@mail.mcgill.ca or call 514-398-4184, ext. 09833.

Examining the Prevalence and Associations of Health and Mobility in Canadians

Here is a chance to participate in a study funded by the University of Waterloo International Research and Partnership Grant to examine the effects of health on mobility among Canadians.  The aim is to determine how health as well as physical, cognitive and social factors influence injury rates including driving and fall related accidents. Findings from this project will lead to program and service development that address the needs of Canadians as they age. Follow up studies will be done in 5 year intervals to see how health, mobility, driving practices, the environment, activity levels and cognitive function have changed.  Comparing data every 5 years will result in greater understanding of health and mobility trends among an aging population. For additional insight findings from this study will be compared to residents of France, who have completed the same survey.

Requirements include:

  • Over 45 years of age
  • Complete a 90 question online survey about your health, attitudes and behaviours, mobility, social demographic factors, driving, falls and a few questions on memory, sleepiness and distraction

To complete the survey in English, please click on:
https://www.surveymonkey.com/r/canadian_health_mobility_survey_eng

Pour l’enquête en Français, vous pouvez suivre le lien ci-dessous: https://fr.surveymonkey.com/r/canadien_sante_mobilite_enquete_fr

Facebook Page:
https://www.facebook.com/CanadianInjuryPreventionSurvey/

For any questions you may contact Sarah Laberge at 519-878-1637, email selaberg@uwaterloo.ca, or the Principal Investigator Dr. Alexander Crizzle at 306-966-2773, email alex.crizzle@usask.ca.