Studies Show PWS Caregiver Stress Can And Should Be Addressed

studies-show-pws-caregiver-stress-can-and-should-be-addressed.jpgParenting a child with special needs can be full of wonderful unexpected moments of joy such as seeing your child accomplish a difficult task or witnessing him or her make progress in therapies after months of hard work. These are unique and special joys experienced by parents of children with special needs. Being part of the special needs community as a parent can also lead to developing deep, meaningful connections with other parents who also have a child with special needs. However, parenting such a child can also be a difficult journey.

For many parents, this journey is not only unexpected (see Emily Perl Kingsley's essay "Welcome to Holland") but can create mental and physical burdens related to the experience of chronic stress as well as increased physical and time demands related to caregiving. Previous research has shown that parent caregivers often experience sleep difficulties, high levels of fatigue, lower immune function, chronic pain conditions as well as increased feelings of depression, anxiety, worry and social isolation. In addition to the psychological and social impacts of caregiving, fulfillment of the caregiving role can also have a significant impact upon the caregiver’s ability to work and the family’s financial well being.

'Putting On Your Own Oxygen Mask First'

Paying attention to the impact of caregiving for a special needs child is important because the well-being and sense of burden the caregivers experience not only can create clinical symptoms for the caregiver but also has the potential to affect the care and the outcome of interventions for the child. Family systems theory refers to a back-and-forth situation regarding how each family member’s distress affects the others, and vice versa. Helping any of the family members has the potential to help the whole family. If the child’s symptoms and behavior improve, parents are less stressed and better able to manage whatever may come. And conversely, if Mom's and Dad's stress, depression or anxiety levels are reduced they may be more able to help their child stay in better balance. Research over the last decade in the area of family stress has shown that teaching parents skills that help them to improve their child's behavior, or teaching the parents skills that help them cope with their own distress, can be very helpful for the child and the family.

Sometimes parents of children with special needs will think "Forget about me. It doesn't matter how I feel. Just find something for my child." This feeling is very understandable, but it ignores the fact that families function as a whole. Helping parents helps children, too. Many parents of special needs children forget their own self care. Sometimes it can be a matter of having a mindset of “putting your own oxygen mask on first" before you help others and prioritizing your own self care.

Study on Stress In Moms Of Kids With Special Needs

A study in the journal Pediatrics (Dykens et al, 2014)(1) highlights this point well. This study examined the potential usefulness of two different parent interventions for reducing caregiver stress and the impact of caregiving on mood and sleep in special needs parents. This study examined mothers of children with a variety of different special needs conditions, mostly children with autism. Eighty-five (85%) of the mothers who participated in this study reported at the beginning of the study significantly elevated stress levels. Additionally almost half of the mothers in the study had symptoms of clinical depression and/or anxiety before they started the treatment study.

The study participants were randomly divided into two different treatment groups, one focused on mindfulness based stress reduction (MSBR) training and the other focused on positive psychology techniques. In brief, Mindfulness Based Stress Reduction (MSBR) is a structured approach that helps people focus on the present moment in a non-judgmental way using techniques like deep belly breathing, different simple meditation strategies and gentle movements like yoga or qigong.

The positive psychology intervention group focused on changing one’s thoughts and perspective, including practicing gratitude and forgiveness and defining one's own strengths. An added component thought to be particularly helpful for the mothers was that the groups being were lead not by professionals, but by other mothers who also had children with special needs. This seemed to be important to the participants so that they felt that the leaders really understood their unique concerns and stresses parenting a child with special needs.

The parent leaders were trained to teach the two interventions by Elisabeth Dykens and her team. At the end of the six weekly group sessions, mothers who participated in either of the two treatment groups (mindfulness strategies or positive psychology intervention) significantly improved in terms of reporting less anxiety and depression symptoms and fewer problematic parent-child interactions. The mothers also reported that they slept better and had greater life satisfaction. Even more importantly these improvements were continued at the six month follow up, after the group treatment sessions had ended.

Reducing Stress For PWS Caregivers A Priority

Most of the previous research on caregiver stress in special needs parents, including the above study on interventions for mothers, has focused on developmental disabilities and special needs populations other than Prader-Willi syndrome (PWS). Less research has been conducted on PWS caregiver stress despite the acknowledgement that many of the features of PWS (e.g., hyperphagia and behavioral challenges) can be very difficult to manage. A recent study (Shivers et al., 2016) (2) has suggested that the characteristics of PWS can be exceptionally demanding for parent caregivers and likely causes significant caregiver stress. In fact, a few small studies have shown that parent caregivers of children with PWS may experience even higher levels of personal and family stress as well as high psychological distress and lower quality of life when compared to parents of children with complex health conditions or with other neurodevelopmental disorders.

Looking at the PWS caregiver perspective in general and more specifically the potential stresses and burdens of caring for a child with PWS are priorities for Foundation for Prader Willi Research. Additionally, this was a top recommendation from the PWS Mental Health Research Strategy Workshop (Schwartz et al., 2016) (3). In the coming months, be on the look out for more information from FPWR about caregiver issues specifically in PWS and new surveys in the Global PWS registry relating to this important topic.

(1) Dykens E, Fisher MH, Taylor JL, Lambert W, Miodrag N. Reducing Distress in Mothers of Children With Autism and Other Disabilities: A Randomized Trial. Pediatrics 2014; 134(2):454-463.

(2) Shivers C, Leonczyk CL, Dykens, E. Life Satisfaction Among Mothers of Individuals with Prader-Willi Syndrome. J Autism Dev Disord. 2016 Jun; 46(6):2126-37.

(3) Schwartz L, Holland A, Dykens E, Strong T, Roof E, Bohonowych J. Prader-Willi Syndrome Mental Health Research Strategy Workshop Proceedings: The State Of The Science and Future Directions. Orphanet J Rare Dis 2016; 11(1):131.

FPWR Enewsletter

Topics: Research

Lauren Roth


Lauren Schwartz Roth, Ph.D., received a B.A. from University of California, San Diego and a Ph.D. in Clinical Psychology from the University of California, San Diego/San Diego State Joint Doctoral Program. She did her clinical internship and research postdoctoral studies at the University of Washington, Department of Psychiatry and Behavioral Sciences and Department of Rehabilitation Medicine studying the the impact of chronic illness and disability on patient well being with an emphasis on the physical and emotional impact on of living with and caring for someone with chronic illness/disability on families. She is a Clinical Associate Professor at the University of Washington, Department of Rehabilitation Medicine and also works as a research consultant for several outside organizations. Lauren is one of the early members of FPWR and served as Vice President and then President of the FPWR’s Board of Directors from 2004 to 2010. She remained on the Board of Directors until 2016. Lauren has also served on the FPWR's Scientific Advisory Board since 2009. She and her husband Mark have two beautiful daughters, including a 19 year old daughter with PWS.