Research is a way of answering important questions concerning the health and well-being of individuals and communities. Research is conducted by scientists alone or in partnership with communities and individuals. Research is funded by government agencies, private foundations or health care organizations. There are many different types of research involving individuals including surveys, clinical trials, or in-depth interviewing. Research can also occur over the telephone, through the internet or use of other technologies, in person, in the home, or health care settings.

People participate in research for different reasons.  Here are some of the most common reasons people offer as to why they participate in a study.

• To play an active role in one’s own health and well-being
• To participate in new services before they become available
• To receive potentially beneficial information
• To share personal experiences so that others may benefit
• To have a sense of giving back, of helping others or contributing to a greater good

Before you agree to participate in a study, you have the right to know the answer to these questions:

• What is the purpose of this study?
• What do I have to do in this study?
• How long will I be in this study?
• Can I still receive medical or other services while in this study?
• Do I have access to the information I provide?
• Will I be informed of any test results?
• What are the potential risks (if any)?
• What are the potential benefits of participating?
• How is the information I provide protected?
• Who do I contact about the study for more information?
• Who is funding or sponsoring the study?
• What do the researchers hope to learn from the study?
• Who if anyone will have access to the information I provide as part of the study?

Informed consent is a process by which you are informed verbally and/or in writing by the research team about the purpose, procedures, risk and benefits of the study. You will be asked to review the informed consent and provide verbal or written consent.

Remember, that giving your informed consent is not a contract and your participation in a study is completely voluntary. You can decide to leave a study at any time. You can also decide not to answer a question that is asked of you in a study. Also, participating in a study does not prevent you from receiving services or participating in other activities.

The information you provide in a study is totally confidential and will not be shared with anyone who is not listed in the informed consent.  Your identity is protected through the use of identification numbers, password protected data files, and locked storage cabinets and offices.

Studies vary in their level of personal risk from having no to minimal risk to having high risk. Before agreeing to participate in a study, the procedures, benefits and risks must be fully explained to you. If the study is right for you and you are willing to participate, you will be asked to read and sign an “Informed Consent” form that states the level of risk, types of risks, and how risks will be mitigated. For the WeCareAdvisor study, there is no to minimal risk.

All research studies must be approved and monitored by an Institutional Review Board (IRB), a legal entity of the institution conducting the study. The IRB ensures that you are protected from risks that may be too great, that your privacy is protected and that you are fully informed about the study and have chosen freely to participate. For more information about informed consent and your protection go to: http://clinicaltrials.gov or contact the Drexel University IRB at 267-359-2471 or HRPP@drexel.edu

Behavioral and psychological symptoms of dementia can be a major source of stress for both caregivers and people living with dementia. Learning how to manage these symptoms can improve caregiver well-being and the well-being of the person living with dementia. The WeCareAdvisor is an innovative web-based tool that caregivers can use at home and at any time they choose to learn why these symptoms might occur and receive recommendations that are customized to their situation that may be helpful to manage them effectively. Your participation in this study will help us learn about the effectiveness of the WeCareAdvisor and make improvements to the tool.  The tool has been developed by researchers at Drexel University and University of California, Davis to help family caregivers manage common behavioral and psychological symptoms of dementia such as being easily upset, agitated, restless, irritable, asking repeated questions, pacing or refusing needed help or other behaviors.

The WeCareAdvisor takes caregivers through a simple step-by-step approach to understand why behaviors may occur and to provide situation specific strategies caregivers can use to manage such behaviors. The study is funded by the National Institute on Aging and examines whether the use of WeCareAdvisor helps family caregivers of persons living with dementia manage behavioral and psychological symptoms, and reduce their own stress and enhance their confidence as a caregiver.

Benefits of participation:

• All caregivers enrolled in this study will have access to the tool and an opportunity to try it out.
• Caregivers will receive education that may be helpful.
• With your help, we will evaluate if the WeCareAdvisor is a beneficial tool for caregivers of people living with dementia.
• All caregivers enrolled in the study will receive a small honorarium for their time in providing feedback in interviews.

 Do I need a smart phone to participate?

• No, you do not need a smartphone to participate. WeCareAdvisor can be used on any internet-capable device, including computer, laptop, tablet or smartphone.

What if I am not good with technology?

• If you can check your email, surf the web, or use mobile apps like Facebook, you can participate in this study.

Is WeCareAdvisor available in other languages?

• At this time, the WeCareAdvisor tool is only available in English and participants must be fluent in English to participate. However, in the future, we may include a separate research supplement to implement other languages, such as Spanish.

I am very busy. Can participation work around my schedule?

• Yes, the study team understands how time-intensive caregiving can be, and all calls will be considerate of your personal schedule. The interviews and trainings are scheduled based on your availability and can be completed in different calls, if needed. There is no time requirement for using WeCareAdvisor. You can use it as little or as often as you would like, at any time. It is up to you.

How will I know how to use the tool?

• Participants are trained on how to use WeCareAdvisor by a study team member. There is also a how-to video of the tool, which you can access here (insert hyperlink). If you have any questions about using the tool during the study, the study team is happy to assist you.

How often should I use the tool?

• There is no time requirement for using WeCareAdvisor. You can use it as little or as often as you would like, at any time.

Can I see my results while I’m in the study?

• Unfortunately, we cannot share your results while you’re in the study. However, we plan to share overall results with all participants after the study is completed.