A mindfulness program run on a free mobile app may be a feasible way of easing stress in mothers of children with fragile X syndrome (FXS), especially the many who carry the disease-causing mutation passed on to their child, a study reports.
Although more studies are needed to better evaluate usefulness, most women who completed the app-based mindfulness program found it helpful, especially those experiencing higher levels of social anxiety and stress. This suggests the approach may be a low-cost and easily accessible tool for doctors treating these women, the researchers said.
The study, “Feasibility of an app-based mindfulness intervention among women with an FMR1 premutation experiencing maternal stress,” was published in the journal Research in Developmental Disabilities.
Caring for a child with intellectual and developmental disabilities, such as those with fragile X, is often a source of increased stress for parents.
Mothers of these children may be particularly at risk as they typically carry a FMR1 premutation that makes them more susceptible to a mental health issues, including depression and anxiety. A premutation carrier for this disease is an individual with 55 to 200 CGG repeats in the FMR1 gene. The full mutation is defined as over 200 CGG repeats, and results in fragile X syndrome.
Building on a growing body of evidence suggesting that mindfulness can alleviate maternal stress and aid the well-being of parents of disabled children, this study examined the feasibility of using an app-based mindfulness training program in women with children with fragile X syndrome.
The study included 18 women with a FMR1 premutation, all mothers of at least one child with fragile X and no prior experience with regular mindfulness practice. They were recruited at the Emory University Fragile X Research Center in Atlanta.
Half of the women had one child with fragile X, 38.9% had two affected children, and 11.1% had three children with the disorder.
Stress and social anxiety were evaluated using a battery of questionnaires at the study’s beginning. Then, participants were asked to download the free mindfulness app, called Headspace Take 10, and complete its program.
The program consisted on 10 guided exercises of 10 minutes each, to be completed on 10 consecutive days.
Each session includes an audio narration to guide the listener through meditation and mindfulness, such as establishing a mediation position, breathing, and body scans.
At the program’s conclusion, researchers conducted telephone interviews to assess if the women felt the program was helpful. To better understand social outcomes and potential barriers to social support, participants were also asked whether they felt their social support was adequate, or whether they had difficulty in reaching for help.
A clear majority, 72%, completed the Take 10 program. Of these, 77% thought it helpful or somewhat helpful.
All those who had expressed a probable social anxiety found the program helpful (eight participants), while 40% (4 out of 10) of those without such initial feelings of anxiety felt it of benefit.
Likewise, most of the women who found the program useful also expressed having trouble reaching out for help (83%).
But the number of children with fragile X, the level of parental stress, perceived stress and stressful life events were not associated with probable social anxiety, the study reported.
In total, 28% felt a lack of sufficient social support, and 61% found it difficult to get help, at least sometimes. Some women said they liked to be alone, while others felt isolated, or said they did not express feelings inside during stressful situations.
According to the authors, this was the first study to implement an app-based mindfulness intervention for maternal stress, and showed it is a feasible approach.
Participants “were willing and able to adhere to an app-based mindfulness intervention, and roughly three in four women who completed the intervention reported finding it helpful,” the researchers wrote.
Greatest benefit appeared to be in mothers at highest risk of mental distress — those with high stress and high social anxiety, and/or those who found it difficult to request the help of others.
“Overall, these findings indicate that mindfulness app interventions are feasible and promising for alleviating maternal stress in this population,” the researchers added.
Although the study was too short and lacked a control group, “given the low cost and high accessibility of this intervention and the overwhelmingly positive responses of women in our sample, clinicians may consider recommending app-based mindfulness to mothers with a PM [premutation] and a child with FXS if they seem likely to benefit,” they concluded.
Future studies should address the app’s effectiveness in a larger sample of women, and compare it with those set aside as a control group and not using the program.