In this 41-minute video, Dr. Elisabeth Dykens presents on the results of stress and the importance of self-care when parenting a child with special needs. Dr. Dykens is Professor of Psychology and Human Development at Vanderbilt Unversity and has done extensive research to understand PWS behaviors and develop strategies to improve mental well-being for the entire family dealing with PWS. She spearheaded the PWS Profile and Hyperphagia questionnaires. Click below to watch the video, or scroll down to read a transcript of the session.
Transcript of the presentation:
Dr. Lauren Schwartz: It is my absolute pleasure to welcome Elisabeth Dykens to come speak with us today. Many of you have probably heard her name before. She has been in the PWS world for several decades. She's a clinical psychologist and researcher studying rare genetic syndromes. She has long been a leader in the field of intellectual and developmental disabilities. Dr. Dykens is currently in the department of psychiatry at Vanderbilt University and is the Director of the University Center for Excellence on Developmental Disability at Vanderbilt Kennedy Center. She's also was the recipient of the NORD 2018 rare impact award, which is quite a prestigious honor and her research examines psychopathology and areas of strength in persons with developmental disabilities. She focuses particularly on genetic syndromes including Prader Willi Syndrome, Williams Syndrome, and Down Syndrome. Dr Dykens also examines profiles of neurocognitive and adaptive strengths in these different disorders, and how these profiles can refine treatments and shed light on development. You may also recognize her name from the hyperphagia questionnaire as she was the initial developer of this very important Prader-Willi outcome that's being used as a primary endpoint in clinical trials. So please join me in welcoming Dr. Dykens to the stage.
Dr. Elisabeth Dykens: Thank you Lauren for that wonderful introduction. I am absolutely thrilled to be here. This afternoon I would like to spend most of our time talking about self-care and what that really means. I'm so grateful to the previous panel, because it was a great setup for many of the points I'm going to be making this afternoon. If there's time, we will also talk about a new measure called the PWS profile. But the focus is really on self-care because I think it is extremely important.
Suffice it to say that self-care has become a buzz word, and I have yet to put cucumbers on my eyes. Maybe I should, but it really has become a popularized term. So this is not me, but this is a journalist writing about her quest for self-care. She says, my quest for self-care: avocado toast, smoothies, kale, anything, yoga mats, assortment of facial products, walking gear, affirmation cards, pamper kits, self-care retreats, workshops, life coaches, and hundreds of podcasts. How have I missed that taking care of one's mental health has become a $10 billion industry? If you get onto Amazon and type in self-care, you'll get more than 80,000 hits of things that you can buy all related to self-care. So it is a huge industry. Just to give you a little sample, mask at hand. Never know which mask is best for your skin, well you can sample these varieties, mood food, you can take different foods that have, one has melatonin in it for sleepiness and others Green tea for alertness. Scrub a dub, you can use caffeine to increase your blood flow in your face. Go glow, certain kind of lavender candle that induces feelings of calmness. Okay. All of these things, including all of the, all the things, they're jumping puddles. Eat a meal you enjoy, sleep in, and walk on the beach, draw, play a game, drink tea, call a friend. Okay. All these ideas about what we all should be doing to take care of ourselves. Right? Booming, booming business.
So much so that the same journalists that I mentioned earlier noted that my self-care almost killed me. It's too much. I can't do it all. It's just way too much. So how does one choose between self-care for the real world? The smart girl's guide to self-care, the book of self-care, let alone books such as the little book of mindfulness and the gift to being yourself on and on and on. The resources go.
So if one pauses and says, well, wait a minute, what is the self-care movement really about? Is this movement really striving towards emotional health or is it simply inexpensive capitalist and consumer-driven act disguised in kale smoothies, yoga mats, and lush face masks? Face masks don't lead to emotional intelligence. They may make you feel better temporarily. They may be relaxing and soothing and smell good, but they don't unto itself lead to emotional intelligence or wellbeing.
So what exactly is self-care? Definitions vary, but self-care is any activity that we deliberately do in order to take care of our mental, emotional, and physical health. The practice of taking care of one's own physical and emotional needs with the goals of remaining healthy and resilient, and if you're healthy and resilient, then you're better able to care for others. A related concept is wellbeing and once again, there's no real consensus definition on what wellbeing is. This is one put out by the World Health Organization. There's a general agreement that at a minimum, wellbeing includes the presence of positive emotions like contentment, happiness, the absence of negative emotions, satisfaction with life, fulfillment and positive functioning. Basically judging life positively and feeling good. For public health purposes, physical wellbeing, feeling very healthy and full of energy is also viewed as critical to overall wellbeing. And some people divide wellbeing into different subtypes, different areas you can have emotional wellbeing, physical wellbeing, social workplace, and societal wellbeing.
So as we think about what self-care means with this backdrop of 80,000 things you can buy on Amazon, I think the first step is to really prioritize self-care and to revise one's views about it, to realize how powerful and vital it is.
Taking care of ourselves is a basic human need. It's not a weakness. It's also not selfish. To the contrary, self-care makes us more available and open to others. We have more to give when we're not exhausted, sleep deprived and overwhelmed. Self-care is an ongoing daily practice, not an every once in awhile splurge. However, I think many of us often neglect to take care of ourselves because our culture values and oftentimes glorifies self-sacrifice. We promote the employee who works for 80 hours a week. We idolize the mom who never seems to need a break. I'm not that mom and I hope you're not kind of that mom either. This belief that self-sacrifice is best creates a great deal of shame when we feel like we need something different. And when we do that, then we can label ourselves as being lazy or selfish or weak. When we ignore our needs over time, we become sick, unhappy and overwhelmed.
The importance of self-care and wellbeing becomes abundantly clear if we look at the research that has been done and the clinical work that has been done in parents and families who are raising offspring with Prader Willi Syndrome. When raising a child with a disability, not just PWS, but any child with an intellectual or developmental disability, there's some good stuff that happens, and oftentimes the good stuff gets overlooked. Things like what families have told us: this kid has given me a whole new way of looking at life. I have novel insights. I've learned what it means to be patient. I've learned that firsthand. I have an increased sense of empathy towards other groups that might be experiencing social injustice. I've redefined what it means to be successful. I become an advocate. Our family is closer. I've met or I wouldn't otherwise have met … and I'm so grateful for that. I've met a whole new group of friends and colleagues. I can appreciate other marginalized groups. This child has enriched our lives and the lives of his or her brothers and sisters, and oftentimes we'll, families will say, this child has been a blessing to us. That's the good stuff.
And there's the stressful bed stuff. Raising a child with a disability, including PWS, can also mean that parents are worried and anxious about what's happening now, and what will happen, not if, but what will happen when parents can no longer care for their child. That's the biggest worry on every survey I've ever done. Parents say their biggest worry is what will happen when I'm no longer able to care for my child. The whole business about constantly educating others, and feeling like people don't get it. Particularly in the rare disease arena. You have to explain and explain and explain. Sometimes I've heard parents say, you know, Down Syndrome? Someone says, yeah, it's like Down Syndrome but it's different. I'm overwhelmed with advocating, navigating, managing, puts a stress on family relations. Stressful things, not just for parents of people with PWS, but for families in general. This lovely study was published two years ago with many people in this room including, Lauren Roth and others, Nathalie Kayadjanian and Theresa Strong, looking at the level of burden that parents felt, and what they found, no big surprise, is that levels of burden among parents of off spring with PWS are high. In fact, they're as high as those seen in caregivers for people with dementia, Alzheimer's disease, traumatic brain injury and Autism Spectrum Disorder. And again, not surprisingly, the level of burden that parents reported, negatively impacted their maternal quality of life.
We have similar data, and these are based on questionnaires and interviews that we did with parents, at two time points, with two years in between. We wanted to see what happens over time to parent-reported levels of stress, anxiety and depression. For stress, only 34% said that they were not clinically elevated at both time points, 42% were stressed at both time points, 14.4 got worse, and only 10% got better.
Same thing with the Beck Anxiety inventory. In this survey, it is predominantly mothers. We have data on dads too, so I don't want dads to feel left out, but these are predominantly mothers. Beck Anxiety, relatively fewer were in the clinical range, but you can see again, the pattern of getting worse over time instead of better. And for the Beck Depression Inventory, the same pattern holds. So, for across all three of those measures, what we found is that over time more people seem to be worsening, then they were getting better or improving.
And this next slide is sort of a work in progress. We're looking at some of the health issues experienced by mothers of children with Prader Willi Syndrome. And we compared them to epidemiological studies of women in the US. The data are not refined enough in epidemiology to look at mothers for raising typical kids, but that would be a good comparison group. You can see that there are some things that seem to be elevated in moms of children with PWS compared to women in general in the US. Things like being overweight, migraines, depression, anxiety, panic attacks, allergies, fatigue, vision and lower back pain. So keep that in mind and when we move through the slides and talk about some of the side effects of stress.
A robust finding in the field is that if you compare families that are raising children with Autism or Down Syndrome or Prader Willi Syndrome or intellectual disabilities in general, invariably those parents report higher levels of stress as well as health and mental health problems than families that are raising neuro-typical developing children. I use to have a slide where I listed all the studies in the last decade…. it got too large. So there's a ton of descriptive studies saying, Hey, guess what? This group is stressed! Well, we kind of know that. We also know that child behavior problems are often a large predictor of stress and distress and families. And, a popular model for understanding this is the stress and coping model where the child with a disability brings stress into a family system. And that child is kind of viewed as other life stressors are in life that the families must cope with and adapt to.
Let's talk a little bit more about stress. We need stress. It's an adjustment or a response that we make. Oftentimes in stressful moments we will activate the HPA axis and hormones such as cortisol are involved. But stress can be caused by good things as well as not so good things, a death in the family, a job loss. I don't know if you ever planned a wedding, but getting married, is joyous event, but highly stressful. So we need stress, but we need it in the right amounts.
If you have low performance and low stress, well then you're, maybe you're under-stimulated, you're bored. Then as you go up you get a little bit more alert. Stress level goes up and the sweet spot is optical performance. Just enough stress to keep you motivated, invested, engaged in whatever you're doing. However, on the opposite side, if you have too much stress, you may become overwhelmed, distressed, dysfunctional, and your performance declines. So, we need to find that sweet spot where we have just enough stress to keep going.
Stress has a way of getting under the skin. Nashville is a buzz with all of these scooters all over the sidewalks, all over the streets, all over the campuses, all these scooters and I have had moments where I'm walking and I feel like I'm going to get run over, this is an acute stressor. What happens then is that I become more alert. My heart beats faster, my blood vessels constrict to bring more oxygen to the muscles so I can run and get the heck out of the way of that scooter. Chronic stress leads to impaired memory and risk of depression, deteriorated immune response, elevated blood pressure, and higher risk of cardiovascular disease. In addition to asking people about their stress, we can also look at different biomarkers of stress such as cortisol. There has been a handful of studies now that have looked at biomarkers of stress in parents who are raising kids with all kinds of disabilities.
My colleague Marcia Seltzer reported an aberrant diurnal cortisol pattern, particularly in moms who had experienced bad behavior the day before. Cortisol typically has this distribution where it's low in the morning after you get up, then it rises as you prepare for your day. That's called the morning peak and then it slowly abates and decreases over the course of time. What we found, a number of years ago, is that mothers had a blunted diurnal cortisol pattern. that's often what you see, for example, in parents who have children that are going through oncology and cancer treatment, in returning war veterans. Gallagher also found a poor antibody response to vaccinations. You're mounting a poor response to vaccinations. And Elsa Epel, looked at oxidative stress by looking at telomere length. So telomeres, are little caps at the end of our chromosomes that serve a protective function, and they get shorter and shorter as we age. What she found is greater oxidative stress and telomere shortening. She compared mothers of children with all kinds of disabilities to parents who are raising neuro-typical children and found enhanced telomere shortening in the mom that is raising children with disabilities. And that cellular aging was accelerated anywhere between 9 and 17 years. So accelerated aging, stress gets under the skin.
So, let's return now to how we think about families. We have this lovely child with PWS. And these are the basic assumptions of not only family studies and PWS, but other disabilities, that over time, we'll see the onset of hyperphagia, some behavioral challenges, maybe some health issues, parental needs to manage, navigate, negotiate, all of which leads to parent stress, distress, the sense of burden, and health and mental health vulnerabilities. That's the classic model.
People are interacting with their siblings or with their parents and we've known in the typical child development world that child development is a function of continual interactions between a child and their parents, and environment. Arnold Summeroff was the first to really launch and put forward this transactional model of child development and what he says is that the development of the child is a product of the continuous dynamic interactions of the child and the experiences provided by his or her social settings, the families. What is core to the transactional model is the analytic emphasis placed on the bi-directional interdependent effects of the child and the environment. All of those fancy words mean children and parents influence one another over the course of time. Right?
If we then revise that initial assumption about family studies and make it broader, you have the child with PWS, and then you have parents and the arrows going both ways. They mutually influence one another. While we're at it, let's add, it's not just problems but also this child's strengths, resources, supports, and schooling and the community. Same thing with parents, their own strengths, their own resources, supports and coping styles. And in the middle you have new resources that come from the interaction that you experience with your child. New social capital, new relationships, new insights.
Based on those continual interactions over time, people in the positive psychology field have called this the broaden and build theory of interaction. To really understand what this transactional model means, you have to really look at people over the course of time. So how do parents and children with PWS mutually influence one another over the course of time? And to do that, one can use something called cross lagged panel analysis. So bear with me. For example, let's say at time one we measured compulsive behaviors of people coming into the lab. We did the same thing at time two and low and behold, we found that they were related to one another. At the same time, we also measured mom's anxiety at time one and at time two and they were related to each other. And then we find that, a second time one compulsive behaviors and maternal anxiety are also related, and in time two they're also related. That's interesting. But the important thing for these analyses is not the blue arrows, it's the black ones. In other words, due time one compulsive behaviors predict maternal anxiety at time two? Or does time one maternal anxiety predict compulsive behavior at time two? You look at the strength of those relationships, statistically you see which one is stronger and more significant and in all likelihood then that's the direction of how things are flowing.
So, we're analyzing lots of data from over 240 families that we've been following, looking at child behavior problems, hyperphagia, health status, age, genetic subtype, gender and so on. And then on the mom's side we're looking at stress, anxiety, depression, mom's health status, age, and marital and employment status. It's an ongoing study. We also wanted to look and see if there were intervening life stressors between time one and time two.
And these are preliminary findings, but what we found is that maternal anxiety at time one strongly predicted child internalizing symptoms like anxiety and depression at time two. Maternal depression also predicted these child problems but less robustly. And in some ways I was not relieved to see this relationship, but not surprised, because in the general population that is a very strong finding, lots of research has studied the effects of a depressed or anxious mom and the impact that has on the developing child, particularly in the adolescent years. So these findings are consistent with other studies. We also found that medical problems in mothers at time one predicted child externalizing problems at time two, things like being aggressive. I'm not sure why that's the case. Maybe if mom is more preoccupied with medical issues, she's less available to handle some of these troublesome behaviors.
However, we also found that those troublesome defiant oppositional behaviors at time one were associated with moms having more mental health problems at time two, and externalizing child behavior problems at time one also predicted maternal stress and personal stress at time two. So it's the externalizing behaviors that really seem to drive the stress. A little interesting aside, we also found that mothers working part time outside the home fared better than full time workers or stay at home mothers. It's almost as if working part time gives moms a chance to exercise their strengths and their skills in a different setting to be valued as an adult, not necessarily as a mom, but as a contributing member of society. And that's just enough to say, okay, sort of got my work fix, things are going great, and it seemed to be sort of somewhat of a protective factor.
We also found that more intervening life stressors between time one and time two was associated with higher hyperphagia scores, but no other child factors. And also those intervening stressors drove up depression, maternal depression, stress and health problems. So interesting findings here. I think we can safely say that if you have a mom who's really distressed, anxious, and depressed, that definitely impacts child functioning, particularly their own internalizing symptoms. I think this funky finding about life stressors and hyperphagia might indicate that when you're going through a life stressor, like moving, changing schools, changing jobs, someone gets married, maybe that's a time to be extra vigilant around hyperphagia and food seeking behaviors. And the final point is that we know we can't take away life stressors. They happen, right? But what we can do is equip parents with tools to manage their anxiety, distress and stress, to engage in self-care, and promote their wellbeing. We can't control life stressors, but we can control how we react to them and what we do about it.
So what does the broader field of intellectual developmental disabilities typically do to help parents and families? Well, there's some usual approaches. One is to offer basic information about the type of child's disability. So you become expert in all things PWS. If you go to see your pediatrician, they might practice anticipatory guidance, what to expect next depending on your child's diagnosis. When they are in kindergarten, you get one handout. When they're a teenager, you get another handout about what to expect next.
Parents are also taught, and this was alluded to in the earlier talk, they're taught many times how to do interventions at home with their child or taught to be at home interventionists, to partner with a therapist, to partner with the school, to learn a skill se, so they can continue to intervene with their child at home. So these are round the clock teaching moments for your child that are aimed at … fill in the blank. Their diet, their muscle tone, their language, their asking skills, their reaching, their playing, their transitions, their inattention, their social skills. At home intervention, which may in of itself become stressful as parents try to do all these things that they're supposed to do, along with manage a household and a family and a job.
If you're lucky enough, you live in a state that has a respite care or short breaks. The benefits of respite care or short breaks are temporary reduction in caregiver stress, new experiences for the child with PWS, or intellectual disabilities, parents have more time to spend during these respite breaks with their other kids or to go see a movie or to take a weekend or go shopping, however they want to spend their time. And these activities are very helpful. They are a welcomed and a much-needed break. But during that time, parents aren't necessarily learning new skills to help them cope with the stressors at home.
How else is the field helping? Support groups, they're great. You can meet other parents as you're doing here this weekend. Parent to parent support and networking is really important. There are also targeted support groups for say autism or age period, like maybe the transition years support groups. And in general, I think groups are really helpful in providing emotional support and friendships and information tips. But you have to move beyond the venting or the grumbling.
And finally, I think we do a great job teaching parents how to be advocates. There are all kinds of state and federal mandates and programs and tips for training parents to be advocates at their child's IEP, to get adult services, bringing information about PWS to professionals. We're great at training advocacy skills. So in brief what the field has done, disability information and guidance. Many ways to be an at home interventionists, lots of advocacy training and skills, parent support groups. Of course, one can also engage in therapy or counseling and these respite care or short breaks.
Even though States are differently successful in implementing these different approaches, parents remain as stressed and distressed now as they were 40 years ago. That hasn't moved the needle on that. Is it time to rethink how we're intervening with families? I think it is.
We recently had the pleasure of receiving a grant, and we were able to conduct a study where the assumption was we're not going to do anything with the kids. We provided onsite childcare run by graduate students and it was wonderful, but we're not going to do anything with the kids. We directly treated parental anxiety, depression, and distress. We turned things upside down and we randomized 243 mothers, we also had dads and those are being analyzed separately, of children with all kinds of intellectual developmental disabilities. And they were randomized into either one of two groups. One we call positive adult development based on principles of positive psychology. And the other one is mindfulness-based stress reduction, which we heard about earlier based on the work of Jon Kabat-Zinn. We also used a peer mentor model. In other words, I as a psychologist didn't get up there and lead the sessions. Instead we trained a fleet of parents to implement the interventions themselves. They were trained in mindfulness, they were trained in principles of positive psychology. They were trained in research principles and what to do if someone's really distressed and how to, how to set boundaries with people. They were very well trained. And I really liked that approach because it takes advantage of the parent to parent rapport that often occurs in the disability field. I was also pleased because we got this grant during shortly after the great recession and the whole idea was to hire people behind these grants. So I hired people.
So the treatment arm that was based on positive psychology, in brief, I don't know if you've ever heard of positive psychology, but essentially, what it's suggesting is that most of the work in psychiatry and psychology has really been on alleviating human suffering and reducing symptoms of mental illness. In positive psychology, it is believed that wellbeing is more than just the absence of the bad stuff, and we really should be as invested in building the best things in life as we are and repairing the worst. And we should be as concerned with making the lives of people fulfilling as well as healing psychopathology.
And for those of you that are interested, Martin Seligman has been a real mover and shaker in the positive psychology field. He's written extensively. Lots of people have done outstanding research looking at the efficacy of positive interventions. But positive psychology is not about that iconic, obnoxious, yellow, happy, smiley face that's not what it's about. It's about nurturing emotions, particularly about the past in terms of feeling gratitude and contentment, in being in the present moment, savoring pleasure and mindfulness and having positive emotions about the future, being hopeful and optimistic. And it's also being able to use our own strengths and virtues to enhance meaning in our personal lives and to engage in something called Flow. Sounds like a pop psychology term, but there's a lot of neuroscience behind Flow. And Flow are those times when you're so engaged with doing something, knitting, reading a book, walking, listening to someone that you lose track of time, your sense of self kind of goes away. The more Flow you have, the better is your mental health. And then, many positive psychologists have talked about what it means to be flourishing, to have meaning in your life. And essentially that's when you can take your strengths and your virtues and use them in the service of something larger than yourself. You give back to the community.
So in the positive adult development program, this was a six week program, the groups were led by parents and they were well supervised to make sure that they were enacting the program as they should. And they emphasized things like: you don't have to control everything, let it go from being feeling grief to feeling gratitude, guilt to forgiveness and grace, conflict to collaborations and virtues, fear to confidence and character strengths, pessimism to optimism. And then folks had assignments and homework to do as well to reinforce those basic concepts.
And the mindfulness treatment arm, it's exactly what you heard about this morning. We taught parents how to be more mindful. Mindfulness based stress reduction has demonstrated efficacy across many studies, looking at people with chronic pain, with chronic or acute illnesses like gastric disorders, people that are just kind of want a little bit more in life. And it's basically paying attention in a non-analytic way to increase mental clarity and self-awareness and living non-judgmentally in the present moment oftentimes by focusing on the breath.
In our six-week program, we enacted these things, stress reduction, not problem behavior. We elicited the relaxation response. We did Qigong, which is another form of yoga. It's a bit more gentle. We talked about cultivating gratitude and joy, working with your emotions, going from grief, from self soothing and self-defining pain is inevitable. Suffering is not. Planting positive seeds, cultivating loving kindness. Parents went through these six week programs. And what was interesting is that at the very beginning when we were recruiting families, we would get people to call up and say, Oh, I'm interested in your program. You mean it's not for my child? Well, I'm not interested. Click. And that's exactly the parent that we needed to reach. Right?
So what we found, I'll cut right to the chase. Both treatment groups experience significant reductions in depression, anxiety, stress, sleep problems, and they had improved life satisfaction at the end of treatment. At three and six month follow-ups, however, the changes were more rapid and more steep in the group that practiced mindfulness. We also learned that trained and well supervised peer mentors can deliver effective interventions with great fidelity.
So we want to scale this up. We've trained other mentors to do the program. The training is available online for these two interventions, but the dominant practice in our field is to really treat the child, not the parent. So we really need to promote the idea that given the prevalence of intellectual developmental disabilities, the CDC tells us it's one in six families who are affected by a developmental disability. Then reducing parental distress is really an urgent public health need that we need to attend to that benefits parents and benefits children as well.
Several years ago, Collins and other psychiatrists published a piece in Nature where they talked about the grand challenges in global mental health. I want to circle back to those peer mentors because given the sort of epidemic we have, parental stress and distress, is it time to develop effective treatments for use by non-specialists including lay health workers with minimal training? I think peer mentors or other mentors can fill a critical need, as long as they have guidance and adequate compensation, and training. And I think there's an urgent need for interventions that reduce parental stress in both young and older parents. However, this is the downside. The Arc, which I'm sure many of you are familiar with, came out with this policy briefing recently. I'm going to read it. Relatively small proportions of federal and state funding for persons with IDD are committed to family support, despite increasing numbers of people with IDD, living for families with their families for longer periods. Consequently though family support is critical for avoiding placement in costly or inappropriate institutions for the family member with IDD, the needed supports are frequently insufficient or unavailable. There is no comprehensive family support system in the US. States vary in how well they support families and how well parents are guided along the way to have access to these important sources of support.
And I'll just end with a quote. This was Karen, one of our peer mentors and she was describing what the experience was like for her. She said, many parents thought ‘I don't have time for self-care’. By the end of the six weeks parents realized ‘when I fill my own cup I have more to give.’ Sometimes they didn't realize how depleted their cup was. That's what self-care is.