‘Telemental health’ may help ease stress for caregivers of PWS children
Remote programs feasible, effective for improving carers' mental health: Study
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Telemental health programs, which provide remote mental health services, may be a feasible and effective strategy to address mental health issues that arise for caregivers of children with rare diseases, including Prader-Willi syndrome (PWS), a U.S. study shows.
In particular, the researchers noted that individual and group-based programs were associated with a significant decrease in participants’ self-reported depression, anxiety, stress, and emotional dysregulation.
According to the team, “the mental health needs of caregivers … [are] often characterized by clinically significant levels of stress.”
The results of this study demonstrate that “virtual community-academic partnerships may provide a useful model for supporting caregivers, while also training the next generation of providers ready to meet the unique, persistent needs of this population,” the researchers wrote.
The study, “Comparing evidence-based telemental health treatments for caregivers of children with Prader Willi and Williams syndromes: feasibility, acceptability, and preliminary outcomes,” was published in the journal Cognitive Behaviour Therapy. The work was led by researchers at Purdue University in Indiana.
Caregivers of those with rare conditions, such as PWS, often experience mental health challenges.
Caregivers often experience anger, anxiety, sadness and guilt
In addition to increased stress levels, such chllenges may include “high levels of negative affect, elevated anxiety and depression, and poor health-related quality of life,” the researchers noted. Negative affect refers to a tendency to experience negative emotions, including anger, anxiety, sadness, guilt, and irritability, which can lead to avoidant or unfriendly behaviors in social situations.
However, “the daily burden of caregiving can make it challenging for caregivers to obtain support for their own mental health,” the researchers wrote. Among other barriers to care is a limited understanding of caregivers’ needs and daily difficulties, as well as a lack of local providers specialized in the experiences and needs of rare disease populations.
In an earlier pilot study, researchers demonstrated that telemental health programs were feasible, during the COVID-19 pandemic, for assisting caregivers of children with rare disorders.
Building on those findings, this study aimed to assess both the effectiveness and feasibility of three telemental health programs in supporting caregivers of children with PWS and Williams syndrome. Like PWS, Williams is a neurodevelopmental condition in which patients require lifelong caregiver support.
The daily burden of caregiving can make it challenging for caregivers to obtain support for their own mental health.
The study enrolled 80 caregivers: 46 of PWS patients, recruited via the Foundation for Prader-Willi Research and social media, and 34 of people with Williams syndrome. The participants, three-quarters of whom were women, had a mean age of 46. Their charges had a median age of 10.
Most caregivers had a college education or higher (86%), were full-time caregivers (63%), and were partnered (84.8%). According to the researchers, “PWS caregivers reported significantly higher caregiving burden than [Williams syndrome] caregivers.”
Based on interest and program availability, the participants were assigned to one of three programs: individual Acceptance and Commitment Therapy, known as ACT; group-based Dialectal and Behavioral Therapy, or DBT; and Integrative Behavioral Couples Therapy, called IBCT.
ACT aims to foster psychological flexibility by helping individuals accept difficult emotions and thoughts rather than fighting them. DBT is designed to help people manage intense emotions and improve relationships, while IBCT is expected to promote emotional acceptance and behavior change in the relationship.
Each programs lasted 12 weeks, or about three months, with either one-hour (ACT and IBCT) or two-hour (DBT) sessions each week. Services were delivered by clinical psychology doctoral trainees via Zoom, under the supervision of a licensed psychologist.
To assess treatment progression, participants completed weekly brief progress surveys, as well as four full forms at the start, middle, and end of treatment, and short reports four times a day.
All 3 telemental health programs tested showed high feasibility for use
Overall, treatment feasibility was high, with most participants (78%) completing the study. Among them, the majority (77%) completed the treatment sessions, and more than half (57%) completed the surveys.
The programs’ acceptability, as reflected in participants’ reports of comfort, overall experience, directions, and interactions with the study team, was also high. Specifically, participants rated the experience with an average Program Acceptability Tool for Telehealth score of 22. This score was higher than the team’s predefined threshold for an “acceptable” result, set at 15.
Most participants also rated the convenience of the telehealth programs as much better (52%) or better (35%) than local care, while 13% rated it as the same.
There were no significant differences in feasibility and acceptability between PWS and Williams syndrome groups, the data showed.
The researchers noted that the participants’ self-reported depression, anxiety, stress, and emotional dysregulation significantly decreased between the start and end of treatment, and their ratings of self-efficacy improved. Importantly, these beneficial effects were observed in the ACT and DBT groups but not in the IBCT group.
By contrast, there were no significant differences in parenting competence, caregiving burden, relationship satisfaction, or daily ratings of stress and negative affect.
When comparing the programs’ effects, the ACT group reported lower depression and stress than the DBT group, and lower anxiety than the IBCT group. Also, the IBCT group reported significantly lower negative affect than the DBT group.
“Taken together, preliminary evidence suggests all three treatments were similarly feasible across two diverse syndrome communities,” the researchers wrote. Further studies are “a necessary next step to determining efficacy,” the team noted.
The researchers noted that mental health challenges for caregivers occurred before the COVID-19 pandemic — and during and after.
“Given that mental health challenges for caregivers … continue to persist, identifying suitable treatment options remains high priority,” the team concluded.
