Welcome to Project WellCAST!
This project from the Kelleher Lab started as a way to support caregivers of children with rare syndromes via telehealth. We know that caregivers of children with neurogenetic syndromes are under a lot of stress, and sometimes it can be hard to find providers who know about your loved one’s condition. We know it can be difficult to have to explain life as a caregiver to people who haven’t engaged with the syndrome community before. And we know that it can be hard to fit support into your busy schedule and life. That’s where we come in!
What is Project WellCAST?
WellCAST started in 2019 as a partnership between patient foundations, researchers and clinicians at Purdue University who were interested in helping families of children with rare disorders access evidence-based support from home.
We know support isn’t one-size-fits-all. In the same way, each person’s WellCAST experience is unique. Some participants receive resources that they can look through at their own pace. Others are paired with highly trained clinicians who provide evidence-based group or individual support programs across several weeks. Others might receive support from peer coaches who also have children with rare disorders and have been in your shoes. We also provide resources and therapy for minoritized families, using culturally sensitive approaches. Across all of these programs, our goal is to help our families receive support that is accessible and appropriate to the needs of rare disorder communities.
WellCAST is also a research study. This means that while participants engage in their support programs, they also share data that helps us understand whether the support we provide is helpful. For example, participants complete forms at several points during the study, and they also answer questions that are “pinged” to their smartphones throughout the day.
On this page, we will guide you through the focus of WellCAST and what you can expect if you do participate.
Our goal is to understand how to best support rare disorder caregivers in their day-to-day lives. To do this, we are sharing several different support programs with rare disorder caregivers across the country. Support programs range from self-guided resources to weekly sessions with highly trained clinicians. Although the specific type of support varies across participants, some parts of Project Well-CAST are the same for everyone:
First, everyone in WellCAST receives some form of support that is scientifically based. The type of support you receive is randomly assigned, with some exceptions that we will discuss in a moment. The five main types of support are:
You may be asking - What data do you collect, and how will I give you feedback about my experience?
Great question! Feedback is very important to us. You will provide data throughout the study to help us learn about you, your family, and your experiences in WellCAST.
First, we will use web-based forms to collect information about your past experiences, family demographics, relevant health and medical information, and perspectives and feelings. Throughout the study, we will ask you to repeat some of these forms so that we can see how your experiences and feelings change over time.
We will also collect data using “snapshot surveys” that are sent to your smartphone. On each day that you are in the study, we will send brief “pings” to your phone that will ask questions about your daily life. Questions might ask what you’re currently up to, your current stress and mood, and how you slept. These questions are much shorter than typical forms – typically only taking 1-3 minutes to complete – and help us learn about the many changes that happen across your daily life. We use these surveys because we know that life changes quickly, particularly for rare disorder caregivers! We want to learn about the “highs and the lows” as you experience them in your daily life.
What do I gain?
We recognize that sending us data takes time. Caregivers receive up to $100 for completing these forms across the project.
By participating in WellCAST, it is possible that you are helping generate knowledge that will improve support options for rare disorder caregivers. Our goal is to use the data that we collect to understand what supports are best for whom, and how to best tailor the treatments to the pieces that make each rare disorder caregiver unique.
Although we hope that participation will support caregiver well-being, Project WellCAST does not provide any guaranteed benefit to participants.
Is participation free?
Yes, all resources and treatments are provided to participants free of charge, and we provide up to $100 compensation for the time caregivers spend completing questionnaires. If your assigned treatment requires the use of technology or materials, we send everything to you free of charge. You are not responsible for any lost or damaged equipment, and we prepay shipping for you to send materials back to us. We can also provide technology to borrow and Wi-Fi hotspots if you need them, free of charge.
What are some risks?
Any clinical trial comes with some risks. The risks for Project WellCAST vary depending on the type of support you receive, and these risks will be clearly shared with you prior to you providing consent to participate in your assigned support activities.
In general, though, we always remind folks that seeking support, participating in treatment, and answering questions about your mood and well-being can bring up challenging emotions and feelings. Caregivers attempting to change how they engage with their child may also experience frustration, including from their child. Please know that if a support option isn’t right for you, you can stop the study at any time, without penalty.
Any research study also includes risks related to technology and data, including breaches in confidentiality. Again, these risks will be clearly shared with you as part of the informed consent process.
Please know that we take your confidentiality very seriously. All of your study data are labeled with a numeric ID rather than your name, we store and transfer all data using secure software programs and platforms, and we train all project staff to uphold rigorous data protection standards. If you participate in a group- or peer-to-peer support option, all participants will also receive training on confidentiality and respecting each other's privacy. These risks and how we protect you from risk will be talked about further as part of the consent process.
What does the study timeline look like?
There are a few phases of this project.
First, interested participants will contact us to determine eligibility. You will complete a brief screening form, as well as a phone interview during which a trained staff member will introduce the study and ask some questions to determine whether you are eligible. If you are eligible, you will receive a confirmation email with instructions to complete enrollment and informed consent.
You will be asked to provide consent at two major points in the study. First, you will provide consent to enter the Baseline portion of the study. This means that you agree to complete forms and snapshot surveys for a two-week period prior to support programs starting. During Baseline, you will not receive any resources or treatment. We will use your data during this time to understand what your life and experiences were like before you receive WellCAST support.
After this baseline period, you will be assigned a support program from the options we discussed previously. We will ask whether you consent to the treatment you are assigned prior to starting treatment. As a reminder, each person’s experience is different, and options might include self-guided resources, individual or group-based treatments via telehealth, peer coaching, and culturally informed supplemental support groups. Because this is a research study, participants do not select which treatment they will complete. However, we will ask whether each broad type of treatment is acceptable to you prior to assigning your treatment, and you always have the option to stop participating in the study at any time. This phase – which we call the “Intervention Phase” lasts 12 weeks. Just like during baseline, you will complete a series of forms and snapshot surveys to help us understand your experiences during this time.
Finally, a few weeks after the intervention phase ends, we will check in with you about your experiences during what we call the “Follow Up Phase.” Again, you will not receive any treatment or resources during this time. However, we will send forms and snapshot surveys to see how you are doing and what your life is like. We will also ask for your input on WellCAST, including what you liked about the project, and what you’d like to see us do differently in the future. This form will be completely confidential and not linked to your study ID or name.
One more thing - Waitlists!
WellCAST is open to rare disorder caregivers from across the country, and unfortunately, we are only able to accommodate a set number of families each cycle. Some participants may be offered the opportunity to enroll in WellCAST as a “waitlist control.” This means that they will be compensated to fill out forms and snapshot surveys throughout the current treatment cycle, but they will not receive any resources or treatment.
During the next cycle, they will again be enrolled in WellCAST, and this time they will be provided with resources or treatment. They are compensated separately for each cycle of the project, or up to $200 total. Waitlist control conditions help researchers learn whether treatments are effective, beyond the typical ups and downs that people experience in their day to day lives.
In some cases, even the waitlist control condition can fill up! Here, we will give prospective participants information about how to re-apply for future rounds of WellCAST, or how to seek similar resources in their local communities.
This project from the Kelleher Lab started as a way to support caregivers of children with rare syndromes via telehealth. We know that caregivers of children with neurogenetic syndromes are under a lot of stress, and sometimes it can be hard to find providers who know about your loved one’s condition. We know it can be difficult to have to explain life as a caregiver to people who haven’t engaged with the syndrome community before. And we know that it can be hard to fit support into your busy schedule and life. That’s where we come in!
What is Project WellCAST?
WellCAST started in 2019 as a partnership between patient foundations, researchers and clinicians at Purdue University who were interested in helping families of children with rare disorders access evidence-based support from home.
We know support isn’t one-size-fits-all. In the same way, each person’s WellCAST experience is unique. Some participants receive resources that they can look through at their own pace. Others are paired with highly trained clinicians who provide evidence-based group or individual support programs across several weeks. Others might receive support from peer coaches who also have children with rare disorders and have been in your shoes. We also provide resources and therapy for minoritized families, using culturally sensitive approaches. Across all of these programs, our goal is to help our families receive support that is accessible and appropriate to the needs of rare disorder communities.
WellCAST is also a research study. This means that while participants engage in their support programs, they also share data that helps us understand whether the support we provide is helpful. For example, participants complete forms at several points during the study, and they also answer questions that are “pinged” to their smartphones throughout the day.
On this page, we will guide you through the focus of WellCAST and what you can expect if you do participate.
Our goal is to understand how to best support rare disorder caregivers in their day-to-day lives. To do this, we are sharing several different support programs with rare disorder caregivers across the country. Support programs range from self-guided resources to weekly sessions with highly trained clinicians. Although the specific type of support varies across participants, some parts of Project Well-CAST are the same for everyone:
First, everyone in WellCAST receives some form of support that is scientifically based. The type of support you receive is randomly assigned, with some exceptions that we will discuss in a moment. The five main types of support are:
- One: Some caregivers will receive resources that they can look through at their own pace. These resources focus on a variety of topics such as challenging behavior, communication, caregiver well-being, and community support.
- Two: Some caregivers will be assigned to receive an evidence-based treatment that is designed to support caregiver mental health. Specifically, caregivers might receive treatments called Acceptance and Commitment Therapy, Dialectical Behavioral Therapy, or Culturally Informed Cognitive Behavioral Therapy. These are all evidence-based treatments that have been shown to be helpful for many adults. Here, caregivers will receive 12 weeks of one of these treatments in either an individual or group format. All treatments are provided by highly qualified clinicians who are supervised by licensed psychologists.
- Three: Some caregivers will be assigned to receive an evidence-based treatment that is designed to support their interactions with their child, specifically as related to communication, challenging behavior, or sleep. Similar to our mental health therapies, these parenting-oriented therapies are evidence-based, delivered by skilled clinicians who are supervised by licensed behavioral interventionists, and are deployed in individual or group formats across 12 weeks.
- Four: Some caregivers will be assigned to receive peer-to-peer coaching, often in addition to another type of treatment. Peer coaching is provided by rare disorder caregivers and is designed to help WellCAST participants identify and overcome barriers that might interfere with treatment.
- Finally, although Project WellCAST is open to people of all races and ethnicities, we have funding to provide additional support groups for Black rare disorder caregivers. These groups focus on race-related experiences and are facilitated by Black therapists. Any Black caregiver is eligible to participate in these support groups, regardless of the other types of support they receive as part of Project WellCAST.
You may be asking - What data do you collect, and how will I give you feedback about my experience?
Great question! Feedback is very important to us. You will provide data throughout the study to help us learn about you, your family, and your experiences in WellCAST.
First, we will use web-based forms to collect information about your past experiences, family demographics, relevant health and medical information, and perspectives and feelings. Throughout the study, we will ask you to repeat some of these forms so that we can see how your experiences and feelings change over time.
We will also collect data using “snapshot surveys” that are sent to your smartphone. On each day that you are in the study, we will send brief “pings” to your phone that will ask questions about your daily life. Questions might ask what you’re currently up to, your current stress and mood, and how you slept. These questions are much shorter than typical forms – typically only taking 1-3 minutes to complete – and help us learn about the many changes that happen across your daily life. We use these surveys because we know that life changes quickly, particularly for rare disorder caregivers! We want to learn about the “highs and the lows” as you experience them in your daily life.
What do I gain?
We recognize that sending us data takes time. Caregivers receive up to $100 for completing these forms across the project.
By participating in WellCAST, it is possible that you are helping generate knowledge that will improve support options for rare disorder caregivers. Our goal is to use the data that we collect to understand what supports are best for whom, and how to best tailor the treatments to the pieces that make each rare disorder caregiver unique.
Although we hope that participation will support caregiver well-being, Project WellCAST does not provide any guaranteed benefit to participants.
Is participation free?
Yes, all resources and treatments are provided to participants free of charge, and we provide up to $100 compensation for the time caregivers spend completing questionnaires. If your assigned treatment requires the use of technology or materials, we send everything to you free of charge. You are not responsible for any lost or damaged equipment, and we prepay shipping for you to send materials back to us. We can also provide technology to borrow and Wi-Fi hotspots if you need them, free of charge.
What are some risks?
Any clinical trial comes with some risks. The risks for Project WellCAST vary depending on the type of support you receive, and these risks will be clearly shared with you prior to you providing consent to participate in your assigned support activities.
In general, though, we always remind folks that seeking support, participating in treatment, and answering questions about your mood and well-being can bring up challenging emotions and feelings. Caregivers attempting to change how they engage with their child may also experience frustration, including from their child. Please know that if a support option isn’t right for you, you can stop the study at any time, without penalty.
Any research study also includes risks related to technology and data, including breaches in confidentiality. Again, these risks will be clearly shared with you as part of the informed consent process.
Please know that we take your confidentiality very seriously. All of your study data are labeled with a numeric ID rather than your name, we store and transfer all data using secure software programs and platforms, and we train all project staff to uphold rigorous data protection standards. If you participate in a group- or peer-to-peer support option, all participants will also receive training on confidentiality and respecting each other's privacy. These risks and how we protect you from risk will be talked about further as part of the consent process.
What does the study timeline look like?
There are a few phases of this project.
First, interested participants will contact us to determine eligibility. You will complete a brief screening form, as well as a phone interview during which a trained staff member will introduce the study and ask some questions to determine whether you are eligible. If you are eligible, you will receive a confirmation email with instructions to complete enrollment and informed consent.
You will be asked to provide consent at two major points in the study. First, you will provide consent to enter the Baseline portion of the study. This means that you agree to complete forms and snapshot surveys for a two-week period prior to support programs starting. During Baseline, you will not receive any resources or treatment. We will use your data during this time to understand what your life and experiences were like before you receive WellCAST support.
After this baseline period, you will be assigned a support program from the options we discussed previously. We will ask whether you consent to the treatment you are assigned prior to starting treatment. As a reminder, each person’s experience is different, and options might include self-guided resources, individual or group-based treatments via telehealth, peer coaching, and culturally informed supplemental support groups. Because this is a research study, participants do not select which treatment they will complete. However, we will ask whether each broad type of treatment is acceptable to you prior to assigning your treatment, and you always have the option to stop participating in the study at any time. This phase – which we call the “Intervention Phase” lasts 12 weeks. Just like during baseline, you will complete a series of forms and snapshot surveys to help us understand your experiences during this time.
Finally, a few weeks after the intervention phase ends, we will check in with you about your experiences during what we call the “Follow Up Phase.” Again, you will not receive any treatment or resources during this time. However, we will send forms and snapshot surveys to see how you are doing and what your life is like. We will also ask for your input on WellCAST, including what you liked about the project, and what you’d like to see us do differently in the future. This form will be completely confidential and not linked to your study ID or name.
One more thing - Waitlists!
WellCAST is open to rare disorder caregivers from across the country, and unfortunately, we are only able to accommodate a set number of families each cycle. Some participants may be offered the opportunity to enroll in WellCAST as a “waitlist control.” This means that they will be compensated to fill out forms and snapshot surveys throughout the current treatment cycle, but they will not receive any resources or treatment.
During the next cycle, they will again be enrolled in WellCAST, and this time they will be provided with resources or treatment. They are compensated separately for each cycle of the project, or up to $200 total. Waitlist control conditions help researchers learn whether treatments are effective, beyond the typical ups and downs that people experience in their day to day lives.
In some cases, even the waitlist control condition can fill up! Here, we will give prospective participants information about how to re-apply for future rounds of WellCAST, or how to seek similar resources in their local communities.
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Kelleher Lab @ the IU Institute for Human Health and Wellbeing
Psychological Sciences | 402 N Blackford St, Indianapolis, IN 46202
phone 765.494.3667 | e-mail [email protected] | web http://thekelleherlab.com
Dissemination | Contact | Resources | Join our Team
Kelleher Lab @ the IU Institute for Human Health and Wellbeing
Psychological Sciences | 402 N Blackford St, Indianapolis, IN 46202
phone 765.494.3667 | e-mail [email protected] | web http://thekelleherlab.com
