Parents of children with Prader-Willi syndrome don’t need to be told that caregiving is hard — you live it every day. You juggle medical complexity, behavioral challenges, constant vigilance around food, and the emotional weight of advocating for your child in systems that don’t always understand PWS. Too often, that leaves little space to tend to your own well-being.
FPWR believes advancing care for people with PWS also means understanding and supporting the families who care for them. That belief is what led us to fund early
research focused not on symptoms or treatments — but on caregivers themselves. In 2019, FPWR awarded a research grant to the Kelleher Lab at Purdue University to explore how best to support the mental health and well-being of caregivers of children with rare diseases, including those with PWS. That work became Project WellCAST.
We’re proud that this initial FPWR-funded study helped launch a much larger research effort — one that has since received significant NIH funding and is continuing to grow. Even more importantly, the findings affirm something many PWS parents already know intuitively: when caregivers receive meaningful, accessible support, it makes a real difference.
Below, the Kelleher Lab team shares insights from Project WellCAST 2.0 — including how the study was conducted, what caregivers experienced, and what these findings may mean for caregiver support moving forward.
The Kelleher Lab at Purdue University launched Project WellCAST in 2019 to better understand how therapeutic support can be delivered in practical, accessible, and meaningful ways to caregivers of children with rare diseases, including Prader-Willi syndrome.
Caregivers of children with a variety of rare disorders were invited to participate in virtual therapies and complete daily and weekly surveys about their own stress and well-being. We provided three different types of therapy:
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Acceptance and Commitment Therapy (ACT; accept feelings, pursue values),
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Dialectical and Behavioral Therapy Skills (DBT; skillfully manage big emotions), and
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Integrative Behavioral Couples Therapy (IBCT; understand, accept, and improve relationships).
A total of 80 caregivers participated, including 46 PWS caregivers. The big questions focused on whether the treatments were feasible and acceptable to caregivers and whether aspects of the caregivers' lives, such as feelings of well-being (e.g., symptoms of depression, anxiety, or stress), improved at the end of treatment.
One unique part of this study is that it partnered with clinical psychology training programs to teach their graduate students about the needs of specific rare disorder populations, and then had the graduate student clinicians deliver the therapies (under the guidance of a licensed provider). This helped to keep costs manageable and teach a new generation of therapists about the needs of rare caregivers!
How Project WellCAST Supported Caregiver Well-Being
Some of the key findings included:
- Finding #1: Caregivers found all three types of treatments to be easy to engage with. There were high rates of session attendance and homework completion, even while navigating busy schedules and their children’s needs.
- Finding #2: Caregivers found the treatments to be a good fit and, in their opinions, better than local options. This was especially important because many caregivers have expressed challenges finding therapists who understand their needs as a rare disorder caregiver. Almost all participants rated the convenience and quality of treatments as the same or better than what was available in their own communities.
- Finding #3: By the end of treatment, caregivers reported reduced depression, anxiety, and stress. They also felt better in control of their emotions, had more feelings of competence as parents, and had greater self-efficacy compared to when they started treatment. However, because we did not have a control group in this study, it will be important to make sure that these effects are stronger than changes that might naturally happen over time (which we’re already doing in WellCAST 3.0!).
These results highlight that giving caregivers therapeutic support really does make a positive difference in their lives and well-being. Treatments were feasible, even for super busy caregivers, and educating graduate students on the needs of rare caregivers led to positive experiences for both the graduate student clinicians and the caregivers.
What's Next for Project WellCAST?
We have continued this work through Project WellCAST 3.0, which has expanded the number of treatment options and approaches to caregivers of children with a variety of neurogenetic conditions. We know therapy isn’t “one size fits all,” so we are now studying which caregivers are the best matches for which types of treatment. We’ll be able to share the 3.0 results in the coming months. Our goal is to make caregiver-centered support accessible, practical, and responsive to caregivers’ needs.
If you’re looking for community and support in the meantime, you are invited to the Kelleher Lab’s Webinar Series for Rare Disorder Caregivers. We meet about once a month and share some bite-sized science and practical, evidence-based tips to support caregiver well-being. Click here for more information. We’d love to see you there!
For Caregivers Reading This
Thank you for the hard work you do each day to meet your child’s needs. W e believe it’s very important for your needs to be met, too, so we’re working to make better support options available to you! We’re so appreciative of the PWS caregivers who participated in this study – your contributions are shaping our research and what caregiver support can look like in the future.
Get Involved in Research That Moves the Field Forward
Progress like Project WellCAST is only possible because families choose to participate in research — in ways that fit their lives. If you’re interested in being part of future discoveries, there are many opportunities available to individuals with PWS and their caregivers. Some studies involve clinical trials with investigational treatments, while others focus on non-medication approaches, caregiver well-being, or everyday experiences. Participation can range from completing a one-time survey to engaging in virtual or text-based interventions to enrolling in more in-depth research studies.
Every type of participation matters. Each study helps researchers better understand PWS, improve care, and develop meaningful supports for individuals and families.
To explore current research opportunities and find options that may be right for you or your family, visit FPWR’s research listings here.
Together, our community is shaping the future of PWS research — and making sure the voices of families are heard.
