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.
Taking Care of Yourself: A Parents Guide to Mental Health, Stress Reduction & Parental Guilt
Taking Care of Yourself: A ParentsGuide to Mental Health, StressReduction & Parental GuiltTina Drossos, Ph.D.Assistant ProfessorDepartment of Psychiatry andBehavioral NeuroscienceUniversity of Chicago
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
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*
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
Long-term consequences Long-term consequences Financial problems Marital problems Work problems Continued uncertainty and fear/worry Hospitalizations etc. “Rollercoaster”
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
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face
Effects of parental mental health onchildren 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
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
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
Mental health in parents of childrenwith 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
Our working model • Biology cannot be separated from other experiences • Social context is essential to consider • Change is part of each level of experience
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
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
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.
Stress reduction strategies Take time out for yourself Walk Exercise Read Cook Warm bath
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.
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.)
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.
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.
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.
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.
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.
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.
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.
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
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
Self Help Books (cont’d) Stress Davis, M., Eshelmen, E.R. & McKay, M. (2008). The relaxation and stress reduction workbook. Oakland, CA: New Harbinger
Quote “I have learned, and grown, moresince Johnny’s birth than any othertime in my life. You learnpatience, and you get to witnessmiracles that you otherwisewould have been too busy to havenoticed... You learn acceptance,you realize you have been wrongto judge, and you learn that thereis a thing called unconditionallove.”
Thank you Contact Information Tina Drossos, Ph.D. University of Chicago 773.702.5887 firstname.lastname@example.org