Improve the Psychological Health of Mothers of Children With Fragile X Syndrome with Mindfulness
By John M. de Castro, Ph.D.
“the key to reducing caregiver burnout and compassion fatigue lies in what can be construed to some as the seemingly counter intuitive wisdom of mindfulness. Being mindful and engaging in radical self-care is proving to be one of the most effective ways to take care of your loved one while fortifying yourself.” – Audrey Meinertzhagen
Fragile X Syndrome is an incurable genetic disorder that involves the FMR1 gene on the X Chromosome. This gene is involved in promotion communications between neurons in the nervous system. This disorder affects about 200,000 children a year in the US and is characterized by trouble learning skills like sitting, crawling, or walking, problems with language and speech, hand-flapping and not making eye contact, temper tantrums, poor impulse control, anxiety, extreme sensitivity to light or sound, and hyperactivity and trouble paying attention. Some children with fragile X also have changes to their face and body that can include a large head, long, narrow face, large ears, a large forehead and chin, loose joints, and flat feet.
Needless to say, raising these children can be a challenge and place considerable stress on the caregivers. Caregiving exacts a tremendous toll on caregivers’ health and well-being. Caregiving has been associated with increased levels of depression and anxiety as well as higher use of psychoactive medications, poorer self-reported physical health, compromised immune function, and increased mortality. The challenges of caring for a child with Fragile X Syndrome requires that the individual be able to deal with stress, to regulate their own emotions, and to be sensitive and attentive. These skills are exactly those that are developed in mindfulness training. It improves the psychological and physiological responses to stress. It improves emotion regulation. And it improves the ability to maintain attention and focus in the face of high levels of distraction. So, it is not surprising that mindfulness improves caregiving and assists the caregiver in coping with the stress.
In today’s Research News article “Mindfulness and Acceptance as Potential Protective Factors for Mothers of Children With Fragile X Syndrome.” (See summary below or view the full text of the study at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6232517/ ), Wheeler and colleagues administered an online survey to mothers of children with Fragile X Syndrome. They measured the severity of the child’s disability, perceived stress, mindfulness, mindful parenting, anxiety, depression, physical health, and psychological acceptance. They then performed a regression analysis to explore the relationships between these variables.
They found that overall the mothers were high in perceived stress and anxiety. The child’s symptoms took their toll as the greater the severity of the child’s disability the higher the levels of stress, anxiety, depression, and physical symptoms in the mothers. They also found that mindfulness and acceptance appeared to buffer these effects with high levels of mindfulness and acceptance associated with low levels of stress, anxiety, depression, and physical symptoms and high levels of mindful parenting associated with low levels of anxiety, depression, and physical symptoms. Importantly, acceptance attenuated the effect of the child’s disability the lower the levels of physical symptoms. Being mindful and accepting of the child’s condition and behavior were very highly associated with reduced maternal distress.
These results are interesting but they are correlational and causation cannot be determined. But they suggest that mindfulness, mindful parenting, and acceptance are important for dealing with the deleterious effects of caring for a child with Fragile X Syndrome. Previous research has shown that mindfulness can produce improvements in the caregiver’s psychological state. So, it is likely that there is a causal connection between mindfulness and the psychological state of caregivers for children with Fragile X Syndrome.
These results suggest that training in mindfulness, mindful parenting, and acceptance may be greatly beneficial for mothers caring for children with Fragile X Syndrome, reducing their distress and potentially improving their caregiving for the child. This is a difficult situation for the mothers and such help could be greatly beneficial.
So, improve the psychological health of mothers of children with Fragile X Syndrome with mindfulness.
“mindfulness practices could be helpful for these caregivers because they encourage a nonjudgmental interpretation of their child’s situation, and increased acceptance of their reality. Mindfulness practices also help people observe their thoughts and behaviors with less reactivity and judgment, which could enable caregivers to better respond to the emotional and physical difficulties they encounter.” – Emily Nauman
CMCS – Center for Mindfulness and Contemplative Studies
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Wheeler, A. C., Miller, S., Wylie, A., & Edwards, A. (2018). Mindfulness and Acceptance as Potential Protective Factors for Mothers of Children With Fragile X Syndrome. Frontiers in public health, 6, 316. doi:10.3389/fpubh.2018.00316
Women with an FMR1 premutation may be at increased genetic risk for stress vulnerability. This increased vulnerability, when combined with stressful parenting that can result from raising children with fragile X syndrome (FXS), may result in negative physical and emotional outcomes. Mindfulness and acceptance have been found to be protective factors for parents of children with similar behavioral challenges, but these traits have not previously been explored among mothers with a child with FXS. This study explored the associations of child disability severity with maternal stress, anxiety, depression, and physical health symptoms in 155 biological mothers of children with FXS. Women completed an online survey using standardized measures of stress, mindfulness, and acceptance. General mindfulness, mindfulness in the parenting role, and general acceptance were explored as potential protective factors between the child disability severity and maternal outcomes. Trait mindfulness and acceptance were significant predictors of lower stress, anxiety, depression, and daily health symptoms, while mindful parenting was associated with lower stress, anxiety, and depression. Acceptance was found to attenuate the effects of child severity on maternal stress and depression. These findings suggest that interventions focused on improving mindfulness and acceptance may promote health and well-being for mothers of children with FXS and have important health implications for all individuals with an FMR1 premutation.