Communiqué de presse

Do you have cerebral palsy & Are you 16-24 years old?

A research study opportunity is available for you, being conducted by fourth year Carleton University student Amy Booker, on a research study entitled Youth with Independence and their Experiences with Independence. 

Please contact Amy Booker at amybooker@cmail.carleton.ca if you are interested in participating in this research study, by the end of February 2022. Please find the study details below.

Title: Youth with Independence and their Experiences of Independence

Lead Researcher: Amy Booker, amybooker@cmail.carleton.ca

Supervisor: Dr. Stefania Maggi

Study Goal: This project explores how independence is experienced amongst youth aged 16-24 who have Cerebral Palsy.

Study Purpose and Benefits: There are limited studies that outline how independence is experienced amongst youth with disabilities. This study hopes to explore how youth with disabilities conceptualize their independence, and how it can be promoted within their daily lives.

Participant Interactions: 

• Potential participants who contact the researcher will be sent the Letter of Invitation via email and a screening interview will be scheduled.
• Potential participants will answer a series of questions to determine their eligibility.
• Eligible participants will be provided with informed consent and an outline of the study, followed by a semi-structured interview
• Participants will have one week to collect data that highlights experiences of independence on their own time through a previously agreed upon method
• A final semi-structured interview will take place after the data collection

Description of Participants: Participants will include 16–24-year-olds who have a diagnosis of Cerebral Palsy.

Obtaining Consent: Participants will be given an informed consent form as well as a photo-video-audio consent form. Participants must consent to their interviews being audio-recorded. Due to the COVID-19 Pandemic, interviews will be conducted remotely on virtual platforms such as Zoom. Consent forms will be signed remotely and emailed to the researcher prior to the start of the first interview. When the participant has given oral consent, the interview will commence.

Withdrawal Procedures: Participants can withdraw from the study at any time and up to two weeks after the completion of their final interview. When a participant withdraws from the study, all information collected will be deleted. To withdraw from the study, participants can send Amy Booker a text through WhatsApp. WhatsApp has end-to-end encryption, and therefore will be used for communicating with participants.

Data Collecting Methods: Two 30-minute semi-structured interviews will be conducted. One at the beginning of the study and the other after the participants have completed their data collection. These interviews will explore how participants conceptualize and experience independence. After the first semi-structured interview, the participants will have a one-week period to collect data about their independent experiences. Data collection methods may include photos, drawings, audio recordings, written diaries, or any other method of choice by the participant. Participants will document any experience they feel highlights their independence and send this documentation to the lead researcher, Amy Booker, via WhatsApp.

Photography & Recording: The lead researcher, Amy Booker, will be audio-recording the interview using her laptop which is password protected. Audio-data will be deleted from the laptop when the data has been verified (e.g., comparison between the audio-data and transcriptions) and de-identified. Participants will be made aware of the use and protection of audio-data in the informed consent form and photo-video-audio consent form. Consent for photos and videos will also be collected from any caregiver or person who may be in a photo or video taken during the data-collection. The individual will be emailed the consent form which they can sign and send back to me. Transcribed data will be saved on my password protected computer. Participants will be made aware of the use of protection of transcribed data (transcriptions) in the consent forms. All material collected during the one-week data collection period will be sent to me immediately after collection via the messaging app WhatsApp. All materials will be saved to the researcher's password protected computer and deleted from the WhatsApp conversation. WhatsApp is a messaging app with end-to-end encryption, meaning all messages sent through the app can only be viewed by the sender and receiver.

Confidentiality: Before the initial interview, participants will be assigned a random pseudonym. Interview transcriptions will be altered to remove all names and identifying information (e.g., where they work, names of other individuals etc.). Once interview data is transcribed, verified (e.g., comparison between the audio-recorded interviews and transcriptions have been made), and de-identified, the audio-data will be destroyed. In all writings about the project, the lead researcher will use the random name that represents the participant.