Taking Care of Yourself: A Parents Guide to Mental Health, Stress Reduction & Parental Guilt
1. Taking Care of Yourself: A Parents
Guide to Mental Health, Stress
Reduction & Parental Guilt
Tina Drossos, Ph.D.
Assistant Professor
Department of Psychiatry and
Behavioral Neuroscience
University of Chicago
2. Rates for pediatric chronic illness
20 million children suffering from
one chronic health problem
3 in every 10 children in the US
For JIA:294,000 children under the age of
18
It is important to know that you are
not alone
3. Response to pediatric chronic illness
Initial diagnosis
Overwhelmed/fear/worry
ANGER
Denial (“This cannot be happening to me, to
my child, to my family.”)
Grief
Feel that you do not have all/enough
information
Confusion
Feelings of isolation
Powerlessness
Blame/guilt*
4. Blame/Guilt
“Did I do something to cause this?”
“ Am I being punished for
something I have done?”
“Did I take care of myself when I
was pregnant?”
Can transform into religious or
spiritual blame
It is normal but you must find a way
to let go of the blame
5. Long-term consequences
Long-term consequences
Financial problems
Marital problems
Work problems
Continued uncertainty and fear/worry
Hospitalizations etc.
“Rollercoaster”
6. Responses (cont’d)
“You can’t make it better. I think that’s the
hardest thing I found: that Mommy couldn’t make
it better.”
Struggle for control over their lives
Strain of not being able to help a child in pain
Changed life (unplanned and unexpected)
Burden of needing to follow a treatment regimen
Increased parental distress
Increased negative affect
Most of these responses are NORMAL
7. Taking care of a chronically ill child
is one of the most draining and
difficult tasks a parent can face
8. Effects of parental mental health on
children
Greater emotional distress (in mothers)
-> higher levels of reported pain
More psychological distress -> greater
pain related disability in youth
Parental reports of mental and physical
health is related to the psychological
adjustment and functional status of
children
9. What to look out for
Depressed mood
Diminished interest or pleasure in activities you used to
enjoy
Decreased appetite/weight loss
Sleep problems
Fatigue/loss of energy
Increased tearfulness
Feeling hopeless and helpless
Problems with attention/concentration
Excessive worry/nervousness
Intrusive thoughts/worries
Increased irritability
*thoughts of death
10. Rates of mental health problems
Lifetime Prevalence rates for adults
(in the general population)
10%-20% depression
16%-20% for anxiety
Lifetime Prevalence rates for adults
with chronically ill children
Approx 30% for depression
Up to 55% for anxiety
11. Mental health in parents of children
with JIA
Parents (specifically mothers) are at
heightened risk for mental health
problems
Association between perceived
impact of JIA on the family and
mothers’ mental health
Association with medications the
child is prescribed
12. Our working model
• Biology cannot
be separated
from other
experiences
• Social context
is essential to
consider
• Change is part
of each level of
experience
13. What can you do?
Educate yourself
Talk openly with your child
Do NOT neglect your relationship with
your significant other
Set aside time to spend together
Communicate openly with your partner
Respect your partners’ opinions
Have a “game plan” for working together
Be on the same page as much as you can
Counseling, if necessary
14. What can you do? (cont’d)
Identify positive coping strategies
Respect individual differences in coping
Social support
VERY IMPORTANT
“In order to receive help, you have to ask for
it.”
Friends and family
Parent-to-parent support groups
JIA professionally led peer support groups
Internet based support groups
Religious support groups
15. What can you do? (cont’d)
Focus on the joys and accomplishments of today—a
smile, interest in a favorite toy, contagious laughter
—not on what tomorrow may or may not bring.
Your feelings are valid, so be easy on yourself to not
feel guilty when you have had a bad day. Find a
way to release your anger, sadness, jealousy and
elation.
18. Deep Breathing
Lie down or sit in a comfortable chair, maintaining good posture. Your body should
be as relaxed as possible. Close your eyes. Scan your body for tension.
Pay attention to your breathing. Place one hand on the part of your chest or abdomen
that seems to rise and fall the most with each breath. If this spot is in your chest you
are not utilizing the lower part of your lungs.
Place both hands on your abdomen and follow your breathing, noticing how your
abdomen rises and falls.
Breathe through your nose.
Notice if your chest is moving in harmony with your abdomen.
Now place one hand on your abdomen and one on your chest.
Inhale deeply and slowly through your nose into your abdomen. You should feel
your abdomen rise with this inhalation and your chest should move only a little.
Exhale through your mouth, keeping your mouth, tongue, and jaw relaxed.
Relax as you focus on the sound and feeling of long, slow, deep breaths.
19. Deep Breathing (cont’d)
Complete Natural Breathing
Sit or stand with good posture.
Breathe through your nose.
Inhale, filling first the lower part of your lungs then the middle part, then
the upper part.
Hold your breath for a few seconds.
Exhale slowly. Relax your abdomen and chest.
Practice these two exercises, in whatever combination feels best for you, for
ten minutes, twice a day.
(Taken from Davis, Eshelman, and McKay; The Relaxation and Stress
Reduction Workbook, 2nd edition; New Harbringer Publications, 1982.)
20. Progressive Muscle Relaxation (PMR)
Progressive muscle relaxation is an exercise that relaxes
your mind and body by progressively tensing and
relaxation muscle groups throughout your entire body.
You will tense each muscle group vigorously, but without
straining, and then suddenly release the tension and feel
the muscle relax. You will tense each muscle for about 5
seconds. If you have any pain or discomfort at any of the
targeted muscle groups feel free to omit that step.
Throughout this exercise you may visualize the muscles
tensing and a wave of relaxation flowing over them as you
release that tension. It is important that you keep
breathing throughout the exercise.
21. PMR (Cont’d)
Begin by finding a comfortable position either sitting or lying
down in a location where you will not be interrupted.
Allow your attention to focus only on your body. If you begin to
notice your mind wandering, bring it back to the muscle you are
working on.
Take a deep breath through your abdomen, hold for a few
second, and exhale slowly. Again, as you breathe notice your
stomach rising and your lungs filling with air.
As you exhale, imagine the tension in your body being released
and flowing out of your body.
And again inhale…..and exhale. Feel your body already relaxing.
As you go through each step, remember to keep breathing .
Now let’s begin. Tighten the muscles in your forehead by raising
your eyebrows as high as you can. Hold for about five seconds.
And abruptly release feeling that tension fall away.
Pause for about 10 seconds.
22. PMR (cont’d)
Now smile widely, feeling your mouth and cheeks tense. Hold for
about 5 seconds, and release, appreciating the softness in your
face.
Pause for about 10 seconds.
Next, tighten your eye muscles by squinting your eyelids tightly
shut. Hold for about 5 seconds, and release.
Pause for about 10 seconds.
Gently pull your head back as if to look at the ceiling. Hold for
about 5 seconds, and release, feeling the tension melting away.
Pause for about 10 seconds.
Now feel the weight of your relaxed head and neck sink.
Breath in…and out.
23. PMR (cont’d)
In…and out.
Let go of all the stress
In…and out.
Now, tightly, but without straining, clench your fists and hold this
position until I say stop. Hold for about 5 seconds, and release.
Pause for about 10 seconds.
Now, flex your biceps. Feel that buildup of tension. You may even
visualize that muscle tightening. Hold for about 5 seconds, and
release, enjoying that feeling of limpness.
Breath in...and out.
Now tighten your triceps by extending your arms out and locking
your elbows. Hold for about 5 seconds, and release.
Pause for about 10 seconds.
24. PMR (cont’d)
Now lift your shoulders up as if they could touch your
ears. Hold for about 5 seconds, and quickly release,
feeling their heaviness.
Pause for about 10 seconds.
Tense your upper back by pulling your shoulders back
trying to make your shoulder blades touch. Hold for about
5 seconds, and release.
Pause for about 10 seconds.
Tighten your chest by taking a deep breath in, hold for
about 5 seconds, and exhale, blowing out all the tension.
Now tighten the muscles in your stomach by sucking in.
Hold for about 5 seconds, and release.
Pause for about 10 seconds.
Gently arch your lower back. Hold for about 5 seconds,
relax.
Pause for about 10 seconds.
25. Guided Visual Imagery
Visual imagery is a process that affects every aspect
of your body. During guided imagery, you control
your breathing and relax your muscles. You focus on
something specific – such as a therapist’s voice or
the instructions on a DVD or audio tape. You enter
into a state of deep relaxation, success, and
wholeness – similar to meditation.
26. Hypnosis
Hypnosis is the induction of a deeply relaxed state, with
increased suggestibility and suspension of critical
faculties. Once in this state, sometimes called a hypnotic
trance, patients are given therapeutic suggestions to
encourage changes in behavior or relief of symptoms.
Hypnosis for a patient with arthritis might include a
suggestion that the pain can be turned down like the
volume of a radio.
27. Self Help Books
Depression
Burns, D.D. (1999) The feeling good
handbook: New York, NY: Penguin Group
(USA)
Pettit, J., Joiner Jr., T.E., & Rehm, L.P. (2005).
The interpersonal solution to depression.
Oakland, CA: New Harbinger
Addis, M.E. & Martell, C.R. (2004) Overcoming
depression one step at a time. Oakland, CA:
New Harbinger
Strosahl, K.D. & Robinson, P.J. (2008) The
mindfulness and acceptance workbook for
depression. Oakland, CA: New Harbinger
28. Self Help Books (cont’d)
Anxiety
Zeurcher-White, E. (2998). An end to panic.
Oakland, CA: New Harbinger
Greenberger, D. & Padesky, C.A. (1995)Mind
over mood. New York, NY: Guilford Press
Insomnia
Hauri, P. & Linde, S. (2996). No more sleepless
nights, Revised Edition. Hoboken, NJ: Wiley
29. Self Help Books (cont’d)
Stress
Davis, M., Eshelmen, E.R. & McKay, M.
(2008). The relaxation and stress
reduction workbook. Oakland, CA: New
Harbinger
30. Quote
“I have learned, and grown, more
since Johnny’s birth than any other
time in my life. You learn
patience, and you get to witness
miracles that you otherwise
would have been too busy to have
noticed... You learn acceptance,
you realize you have been wrong
to judge, and you learn that there
is a thing called unconditional
love.”
31. Thank you
Contact Information
Tina Drossos, Ph.D.
University of Chicago
773.702.5887
tdrossos@yoda.bsd.uchicago.edu
Editor's Notes
Chronic illness define here as a condition of non-psychiatric nature that has a serious impact on functioning and general lifestyle
Reactions to initial diagnosis: varied, depending on illness factors, prognosis, severity and then personal factors such as number of other stressors, available coping strategies etc. Blame/guilt: worry that others are blaming you then you may start to blame yourself or wonder how you are handling the situation.
Did my wife take care of herself when she was pregnant Not all
Many poepl describe the experience of living with a child with a chronic illness as a rollercoaster. The rollercoaster can also express how your emotions change over time
Burden of needing to follow a treatment regimen: this includes doctors visits and taking meds etc. Parental distress in these situations is constructed as a NORMAL response to the stress of a child’s chronic medical condition rather than a indication of a mental health problem. However, even subclinical levels of parental distress can affect the child and thei ability to fucntion and adjust.
Not all parents go through all of these feelings/stages but its important to identify with all of the potentially troublesome feelings that can arise so you know you are not alone
Overall, there are not many studies looking at how parental functioning impacts children’s functioning but this was actually a study with families of children diagnosed with JRA 3. The quality of parent’s functioning is interwoven with his or her child’s functioning
Sleep problems: here are higher rates of sleep problems in parents of children with chronic illness overall regardless of depression or anxiety due to caregiving at night etc. However, what we do know is that poor sleep can lead to anxiety /depression If you start to experience these symptoms, it may be worth talking to your physician initially as a starting point to see what they recommend. If you feel you need to talk with a therpaist/counselor but don’t know where to turn, typically if you call your insurance company and ask for providers in your area, they are able to provide that information and this way you know the services will be covered.
Lifetime rates of (particularly mothers of children with chronic illness): What we are seeing is that 30 percent of [mothers] meet the clinical criteria for depression … double the rate of a regular sample,” says Quittner, principal investigator for the study, known as the TIDES International Depression/Anxiety Epidemiological Study. The study also found that more than 55 percent of the children’s primary caregivers were anxious. These parents feel isolated and stressed by such challenges as obtaining insurance when a child has a pre-existing condition and the financial strain of co-payments for doctors’ visits and medications.
Mothers who think that JIA impacts the family more are more likely to have mental health problems. Basically, saying that if parents feels that the condition is greatly restricting their child from have a “normal” life then they have more mental health problems Meds: there also seems to be an association between the type of meds taken by children (ie. steroidals) and greater mental health problems. This is likely related to severity of illness so they are on stronger meds so this is impacting parents more
Educate yourself: the more you know about what is going on with your child, the more in control you will feel when speaking with doctors and making decisions. Basically, the more you know the more empowered you will feel and this will make you a better advocate for your child, your family and yourself. Talk openly with child: developemtally appropriate; this may seem uncomfortable or overwheling so take your time with it. Yu can ask for help/support from peers/doctors/teachers etc who are involved with your child. You not only want to talk openly about the illness/consequences etc but also about your feelings. Kids are very observant and perceptive (they know when you’ve been crying or upset even if you have done your best to try and hide it) so when appropriate be open about how you are feeling. Your child will appreciate this and in the end you will feel better. For example, if you are anxious about a situation or result your child will pick up on your anxiety and end up being even more anxious Do not neglect your relationship: IN addition to disruption in your home, the illness may cause marital strain and lifestyle changes. It is so imperative to work on your relationship as much as you can. When parents are “stressed” it is very easy to take it out on each other and/or simply neglect each other
Coping: mothers and fathers may have different wasy of dealing with the situation at hand, and each parent is likely to struggle with the situation in their own way. Typically fathers like to distract themselves/distance themselves from the situation in order to cope, while mothers typically try to control the illness or keep routine/talk with doctors in order to cope. Mothers typically show a wider range of coping strategies than fathers but neither way is wrong. I have often seen mothers become upset at their husbands for “not keeping up with the ilnness” but its often necessary for father to step away from the situation in order to cope Social support: You need to aks for help but often people are reluctant. They don’t want ot be a burden or perceived that they can’t handle it.or they don’t want to acknowledge that the illness has changed their lives etc. but it is very important that you seek/ask for help one thing to know is that research shows that fathers are more likely to rely on their wives as their main source of support, while mothers are more likely to use both their spouses and other formal and informal sources of support. There have been studies that have been completed looking at the impact of a social support group on parental stress/psychological distress and they have found that it helps. Talk about my support groups at U of C.
Think about what makes you feel relaxed and put aside time to do that. It may seem impossible to try and find time but its important to create a space for yourself. Taking time for yourself may seen self-indulgent but actually it will recharge you and make you a better parent and will help prevent burn-out.
The important things here is that typically, you are using all 5 senses. In the context of this relaxing setting, patients can also choose to imagine themselves coping more effectively with the stressors in their lives.