Interventions focused on improving mindfulness and acceptance may promote the health and well-being of mothers who have children with fragile X syndrome (FXS), as well as having important health implications for all individuals with an FMR1 premutation, a study finds.
The study, “Mindfulness and Acceptance as Potential Protective Factors for Mothers of Children With Fragile X Syndrome,” was published in the journal Frontiers in Public Health.
Besides the developmental disability and characteristic physical features linked to FXS, individuals with this rare disease often exhibit anxiety-related symptoms, attention-deficit or hyperactivity disorder-like symptoms, and aggressive or self-injurious behaviors.
Parenting a child that has these debilitating conditions can have a significant burden on the family, with negative physical and emotional outcomes. Although both parents are affected by stress related to caring for children with FXS, biological mothers may be especially vulnerable because they are the carriers of the FMR1 premutation, defined as 55 to 200 CGG repeats in the FMR1 gene, fewer than those necessary for FXS to manifest. Studies have shown that individuals with a premutation are at increased risk for several health problems.
Previous studies have shown that strategies to promote mindfulness and acceptance can have a protective effect for parents of children with similar behavioral challenges. Mindfulness is the ability to be fully present, aware of where we are and what we are doing, and not be overly reactive or overwhelmed by what may be occurring around us.
Researchers at University of California, Davis, explored whether these strategies could also be beneficial for mothers of children with FXS. They wanted to further understand how acceptance, trait mindfulness, and mindful parenting, as well as the severity of child disability, related to outcomes of mothers of children with FXS.
“A growing body of research shows that individuals with a permutation may have an increased biological risk for stress-related illnesses,” the researchers wrote. “Thus, understanding mechanisms that may be protective is of paramount importance and are critical for designing effective intervention strategies.”
The study recruited 155 women who were carriers of an FMR1 genetic alteration and were the biological mothers of 322 FXS children. They responded to the Our Fragile X World national survey, which focused specifically on the experiences of individuals with FXS and their families.
Approximately 38% of the mothers reported high levels of stress, which is high in relation to stress in the general population (5.3%).
Anxiety was also high in this population, with 43% of the respondents reporting clinically relevant symptoms, as determined by the guidelines of the National Institutes of Health Patient-Reported Outcome Measurement Information System. In contrast, depression was not as prevalent, affecting only 14% of the participants. These women also had more physical symptoms (22%) than expected, compared with the general population of women.
In general, the severity of the children’s disability significantly predicted each maternal outcome. Additionally, the education level of the mother was found to correlate with depression and daily health symptoms.
After determining the five main constructs of dispositional mindfulness — observing, describing, acting with awareness, nonreactivity, and accepting without judgement — using the Five Factor Mindfulness Questionnaire–Short Form, the team found that general mindfulness was a significant predictor of all maternal outcomes: stress, anxiety, depression, and daily health.
Increased mindfulness was found to be associated with lower scores of stress, anxiety, depression, and daily symptoms. The effect of the child’s disability on maternal outcome decreased slightly when general mindfulness was added to the team’s predictive model: Stress was reduced by 16.67% and anxiety by 12.5%, while scores for depression were 16.67% lower and daily health symptoms 6.25% lower.
Mindfulness specifically applied to parenting was a significant predictor of three maternal outcomes: Higher mindful parenting was related to lower scores on measures of stress, anxiety, and depression.
The effect of the children’s disability on each maternal outcome decreased when mindfulness in parenting was added to the researchers’ predictive model: The effects were reduced by 22.22% for stress, 8.33% for anxiety, 11.11% for depression, and 3.13% for daily health symptoms.
“Trait mindfulness and mindful parenting were highly correlated, suggesting that parents who are generally mindful are also mindful in the parenting context,” the researchers said. “However, while trait mindfulness was related to physical health, mindful parenting was not, suggesting a potentially different pathway by which general mindfulness may impact health.”
Acceptance and flexibility also significantly predicted all maternal outcomes: Better acceptance and flexibility was associated with lower stress, anxiety, depression and daily symptoms.
This “preliminary evidence suggests that an intervention approach focusing on increasing acceptance can make a difference in the quality of life for both caregivers and the individual with special needs,” the researchers said.
Based on these results, the team believes that psychological interventions focused on mindfulness and acceptance “may promote health and well-being for mothers of children with FXS.”