The Caring Experience Project
Informed Consent for Journey Mapping Engagement

Informed Consent Form — The Caring Experience

This Informed Consent form is for engagement participants whose documented experience will help us evaluate the interaction of caregivers and the health care system as part of the Caring Experience project.

Principal Investigators:

Patrick Boot,
Senior Design Researcher, Overlap Associates

Chelsea Mills,
Design Researcher, Overlap Associates

Co-Sponsors:

The Change Foundation

Ontario Caregiver Coalition

 

This Informed Consent form has two parts:

  • Part 1: Information Sheet (to share information about the project with you)
  • Part 2: Certificate of Consent (for your signature, should you choose to participate)

Part 1: Information Sheet

Introduction

The Change Foundation has partnered with the Ontario Caregiver Coalition to create The Caring Experience: an outreach project to better understand, and ultimately improve, the experiences of people who provide care or support to someone with a health issue. Overlap Associates has been asked to design and conduct engagement activities with family caregivers across Ontario to understand their experience of interaction with the health care system.

You are being invited to participate in this program evaluation, which is different from receiving health care services. Any services you are currently engaged with will not be negatively impacted by you talking to us. You may talk to anyone about what we are asking you, and can take some time to decide if you want to participate or not.

Please ask questions if you need clarification on any part of this form.

Participant Selection

We are looking for family, friends and/or neighbours who provide care or support to those with episodic, chronic, acute, and/or frailty-related health issues and who are willing to share their experience. We use the broadest definition of “family”: the role of family caregiver is mutually determined by the people providing care and support and those receiving it.

20 family caregivers will be selected for this phase of engagement. The intention is that these caregivers interact with the health care system with a degree of regularity so that documenting their experience provides usable data. We will make our best efforts to ensure that these 20 people represent the full range of demographics exhibited throughout Ontario.

In addition to the Journey Mapping engagement activities, we will be hosting a series of facilitated Caregiver Workshops throughout the province, as well as a short series of online mini surveys; both of which provide alternative avenues for interested parties to participate.

Voluntary Participation

Your participation in this outreach project is voluntary. You may choose not to participate or you may withdraw from the evaluation at any time. You will not be penalized in any way if you decide not to participate in this evaluation or choose to withdraw at a later date. There are no known benefits to you that would directly result from your participation in this evaluation; however, your information will help us understand some of the ways the health care system can be improved for others.

Potential Journey Mapping Engagement Activities

We want to learn about your daily life in hopes of applying this knowledge to the design of services. The intent is that our services evolve to reflect the needs of the population they serve. We want to learn about you in a way that matches your strengths and comfort level, so we have several activity options to choose from. You could be asked to do any of the following activities:

  • Participate in daily interviews of up to an hour in length; in person or over the phone. With your permission, the interview will be audio recorded to ensure accuracy and to gather quotes (which will be used only with your permission.
  • Respond to online surveys and other electronic data collection activities
  • Capture your experiences through writing, sketching or voice recording (i.e. dictation)
  • Tell us stories about yourself; past and present
  • Use a camera or smartphone to take photographs of your surroundings and your interactions
  • Receive and reply to scheduled texts/emails/calls and/or other communications from the outreach team
  • Other activities as appropriate

We will work with you to choose activities that are comfortable for you. Remember, you can stop participating in the project at any time. You can tell us you don't want to answer a question or do an activity. You can say you don't want to talk about a certain topic. You can tell us that you want out of the project altogether. Once you tell us, we won't ask again.

Time Commitment

Journey Mapping activity participation will involve approximately 15 hours of participants’ time over a period of up to five days; with one pre-interview and a final meeting to review the information you documented for us and debrief. The engagement will take place throughout January and February 2016. We will work with you to determine an activity plan and schedule that works for you. The engagement could be over five days in a row or up to five selected interactions throughout January and February.

Reimbursement

We know that participating will take time, and we want to show that we appreciate that. As a Journey Mapping participant, you will be reimbursed with a cheque for the value of $200 for your time spent engaging with us. Should we learn of financial hardship, we will assess each situation on a case-by-case basis and refer to The Change Foundation’s Should Money Come Into It? document to determine additional compensation for up to a maximum of 15 hours.

If you require the arrangement of respite care and/or transportation while you participate in Journey Mapping activities, The Change Foundation will assist with any associated costs for these services.

We will also take care to connect you with an extensive list of Caregiver resources via The Caring Experience Project website, www.thecaringexperience.ca.

Benefits

Our hope is that you will be helping present and/or future service and support recipients by participating in this engagement. We will use the data you share to try to improve services and support for caregivers interacting with the health care system. We want to make a change, but we don't know how big that change will be or how much we can improve things. If we do make services better in the future, it may not benefit you specifically.

Risk

We are asking you to share with us potentially personal and private information, and you may feel uncomfortable talking about some of the topics. If there are questions that you are uncomfortable answering you can simply decline to answer. You do not have to tell us why you don't want to answer a given question or take part in a given activity.

This engagement may change your daily routine which can cause discomfort for some participants. We will do our best to minimize this risk and impact by making an engagement plan that fits your strengths and your schedule. During the engagement, others in your community may notice that you are doing something different. Documentation of your experiences may draw attention to you, and you may be asked questions by other people about what you are doing.

During engagement you will be sharing and connecting with members of the Overlap team. You could find it an interesting experience and enjoy getting the chance to tell your story. The engagement period, including these interactions, will end. It is possible that you may have negative feelings at that time. To help with this, we will conduct one debrief interview following the engagement activities. This will be a time to compare how you felt during engagement with how you feel post-engagement. At that time we will thank you for your participation and ensure we still have your consent to use the data you have recorded.

Risks of Using Electronic Communication

The Project Team will use reasonable means to protect the security and confidentiality of information sent and received during this engagement. However, because of the risks outlined below, the Project Team cannot guarantee the security and confidentiality of electronic communications:

·      Use of electronic communications to discuss sensitive information can increase the risk of such information being disclosed to third parties. Despite reasonable efforts to protect the privacy and security of electronic communication, it is not possible to completely secure the information.

·      Employers and online services may have a legal right to inspect and keep electronic communications that pass through their system.

·      Electronic communications can be forwarded, intercepted, circulated, stored or even changed without the knowledge or permission of the Project Team or you, the participant.

·      Even after the sender and recipient have deleted copies of electronic communications, back-up copies may exist on a computer system.

If the email or text is used as an e-communication tool, the following are additional risks:

·      Email, text messages, and instant messages can more easily be misdirected, resulting in increased risk of being received by unintended and unknown recipients.

·      Email, text messages, and instant messages can be easier to falsely create than handwritten or signed hard copies. It is not feasible to verify the true identity of the sender, or to ensure that only the recipient can read the message once it has been sent.

 

Confidentiality

All information you provide is considered completely confidential. Project reports may include some of the direct quotations, stories and/or experiences you describe. Your name and other personal identifiers will be removed from any reports that are written. Those who know you and/or your story may realize that you participated in this project after reading a project report. If, at any time, you wish to have a story or an experience removed from a report you can ask and we will accommodate fully.

Your data will be safe. Any physical data containing personal identifiers will be stored according Ontario Privacy legislation, in a secure office in a secure cabinet. Any digital data containing personal identifiers will be stored using the recommended level of encryption and password protection. This information will be shared on a need-to-know basis, with only those who are directly involved in the engagement activities and subsequent analysis and reporting. All data collected by the Overlap team will be kept for one year after following the production of the final project report, at which time it will be permanently destroyed.

There are situations when we would have to share information without your express consent. For example, if you are at risk of harm to self or others, we may need to share need-to-know information to appropriate authorities to keep you safe. If we suspect a child is at risk, we will share information to keep that child safe. We are also required by law to respond to a subpoena and/or search warrant. We ask that you not reveal anything that could get yourself or others in legal trouble. If you say something that we or you consider incriminating, we will remove that statement from all recordings and notes. In the event of a court-ordered subpoena, we are legally obligated to handover engagement documentation.

Sharing Project Results

The output of this phase of engagement will be used to better understand the interaction of family caregivers and the health care system en-route to generating ideas for how to improve those interactions. Results of The Caring Experience project will be shared with the project team and the project sponsors. Results will also be made available to the general public on the www.thecaringexperience.ca website. If you do not have access to the Internet, alternative arrangements will be made to ensure you have access to the project results.

Results will be shared in several different formats some of which may include written reports, drawings, visuals, and/or presentations. We will make sure that you have the opportunity to see all outputs, as long as we are still able to contact you.

Right to Refuse or Withdraw

You have the right to stop participating in any given portion of the engagement activity if you so desire. You also have the right to stop participating entirely. You can do this at any time by communicating this wish to any member of the project team. This refusal and/or withdrawal will not incur any negative consequences.

  • If you wish to cease involvement at any point during the engagement, please let us know so we can stop contacting you and remove your data from our results.
  • If you do not want to answer a question, let us know and we will not ask it again.
  • If you do not want us to include a story or other piece of information in our results, let us know and we will remove it. 

Who to Contact

If you have questions regarding any portion of this Informed Consent form, this engagement activity, or The Caring Experience project in general, please contact Patrick Boot or Chelsea Mills:

Patrick Boot
patrick@overlapassociates.com
226-317-0305 x260

Chelsea Mills
Chelsea@overlapassociates.com
226-317-0305 x225


Part 2: Certificate of Consent

Alternatively, you can download a copy of this form here.

Chelsea - chelsea@overlapassociates.com
Evaleen - evaleen@overlapassociates.com
Patrick - patrick@overlapassociates.com

If you need details about how to complete and return a paper version of this Consent form, please ask a member of the project team!