Purdue Psychological Sciences researcher to streamline telehealth for caregivers of young patients with rare neurogenetic syndromes

Written by: Tim Brouk, tbrouk@purdue.edu

Bridgette Kelleher

Who cares for the caregiver?

Bridgette Kelleher, associate professor in the Purdue University Department of Psychological Sciences, does, and her current research aims to improve the mental and physical health of caregivers tending to young family members with rare neurogenetic syndromes.

In fall 2023, Kelleher was awarded a $2.97 million grant from the National Institutes of Health (NIH) to improve and advance telehealth methods while gaining knowledge on care for people ages 2-35 who have been diagnosed with rare neurogenetic syndromes such as Angelman, Williams and Prader-Willi. Simultaneously, she is monitoring the well-being of the caretakers — up to 1,000 of them.

Kelleher said many of the families she has met with are the only ones in their community that have a child with a rare neurogenetic syndrome, such as Angelman syndrome, which “causes delayed development, problems with speech and balance, mental disability and, sometimes, seizures,” according to the Mayo Clinic. This means they have no support or other people to go to when they need help with or understanding about their child’s condition. Often, these families are in small towns or secluded areas. Transportation issues are difficult for most of them, Kelleher mentioned.

“Flying them to and from clinics is a huge burden, especially when the child has limited mobility or challenging behaviors,” she said. “Some of these families are tremendously isolated.”

Project WellCAST (Supporting WELLbeing of CAregiverS via Telehealth) is a three-year randomized control trial that will explore how individual differences — such as a person’s background, experiences, symptoms and family characteristics — can shape how they respond to evidence-based telehealth treatment.

First steps

Project WellCAST started through community-academic partnerships with patient organizations dating back to 2019. Including the current trial, more than 350 families have received therapy and support from the program to date. As of summer 2024, Kelleher’s findings are already shaping future work. An example, Kelleher learned traditional — often long — intake forms don’t share the full picture of what families are experiencing. Instead, Kelleher’s team uses short questionnaires — called ecological momentary assessments (EMA) — three times a day. What used to take about an hour or more to answer around 100 questions now takes about three minutes per EMA.

“Filling out a long form when you’re managing a bunch of kids was not feasible during the pandemic in particular,” Kelleher said. “Who had an hour to sit down and kind of luxuriously fill out some paperwork? Plus, the forms weren’t capturing the dynamic daily experiences of families.

“By doing shorter questionnaires that were much more in-tune to their daily lives, we were able to get a much richer topography of what their needs were, and we’re able to start thinking of clinical systems in different ways. For the first time, I think we’ve been able to really see what the needs are.”

A telehealth early adopter

According to the NIH, telehealth services made up 0.2% of all outpatient services in February 2020. That number skyrocketed to 50.7% two months later because of the effects of COVID-19 on the United States.

Kelleher was one of those early 0.2% of pre-COVID telehealth adopters. Since 2016, NIH has funded Kelleher to innovate how technology is used to capture experiences of families across the nation, giving her team a head start when faced with the pandemic. Soon after the pandemic dust somewhat settled, Kelleher noticed improvements now had to be made in the field.

“During the pandemic, things were flipped out of necessity, and researchers didn’t have time for best practice. They didn’t know who telehealth is good for and who it’s not good for. We’re now in the space of having the right tools,” Kelleher said. “But what we’re still trying to figure out from the scientific perspective is how to do telehealth well, and how to make sure we’re not further marginalizing people who already have restricted access.”

Perhaps surprisingly, Kelleher’s current study is not technology heavy. Smartphones, tablets or laptops suffice during her virtual visits with participating families. She hopes streamlining and simplifying the telehealth user experience will have positive impacts on the mental and physical well-being of the caregivers.

“I know that sitting with a baby in your lap, if you’re trying to get them to do something, your full attention is on helping them stay engaged. You don’t have time to wrestle with the volume or a cord. A lot of what we do is try to really simplify how we design our kits and devices,” she said. “Everything is done in a very family-friendly, caregiver-centered kind of way.”

Caregivers for the caregivers

Because caregivers enrolled in Project WellCAST often parent children with rare conditions, some of the syndromes studied have 100 or fewer cases in the United States. This means there are fewer resources and less knowledge for caretakers to lean on. To help solve this, Kelleher has recruited nine “peer coaches” from around the country to work remotely with some of the families during her current study. Employed as Purdue staff members, the coaches have experience being caretakers of young people living with rare neurogenetic syndromes. Investigators think the shared experience over Zoom could pay huge dividends for a caregiver seeking any kind of help for their child.

“(The coaches) are trained in a very specific protocol to help motivate, encourage and support folks that are going through mental health treatment or parent-coaching treatment,” Kelleher said. “We’re interested in seeing whether getting that boost from another rare disorder caregiver helps patient outcomes.”

The coaches are also helping shape the framework of the new study with their experience and compassion for other caregivers. For example, they are training graduate students at Purdue and other Project WellCAST sites on how to provide the best telehealth care for the families. They also help develop project materials and interpret patient outcomes.

“They’ve given some really amazing suggestions to making our materials more accessible,” Kelleher affirmed. “Plus, the students have learned a tremendous amount from their input. While we’re meeting this community need, we’re also helping train the next generation of providers and helping students learn about patient-centered clinical trials.”

One of those students, Lisa Brown, noted the study includes specialized supports for Black caregivers who often face extra barriers as they navigate health care systems, especially when they have family members with rare neurogenetic syndromes to care for.

“Providing these therapies will allow Black parents of children with rare disorders to address challenges brought about by racial trauma and therefore feel better in their own lives while also providing better support for their families,” they said.

Interested families wanting to participate in the project should email wellcast@purdue.edu.