Caring for the Caregiver. Tina Drossos, Ph.D. Assistant Professor Department of Psychiatry and Behavioral Neuroscience University of Chicago

Transcription

1 Caring for the Caregiver Tina Drossos, Ph.D. Assistant Professor Department of Psychiatry and Behavioral Neuroscience University of Chicago

2 The psychosocial impact of childhood chronic illness is ubiquitous and involves the entire family, as well as schools and society as a whole (Guthrie et al., 2003)

3 Rates for pediatric chronic illness 20 million children suffering from one chronic health problem 3 in every 10 children in the US It is important to know that you are not alone

4 Response to the initial diagnosis Initial diagnosis Typically takes 9-12 months for parents to adjust Grief Overwhelmed/fear/worry ANGER Denial ( This cannot be happening to me, to my child, to my family. ) Feel that you do not have all/enough information Confusion Feelings of isolation Powerlessness Blame/guilt* Goal is Resolution* (at some point)

5 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

6 Responses (cont d) You can t make it better. I think that s the hardest thing I found: that Mommy and Daddy 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 Impact of Dravet Syndrome on the Family We were stunned by the enormous impact that this condition had upon our family. Parental worry increases Both parents, the child, and siblings will need to go through a lot of adjustment issues

8 Impact on the Family (cont d) Emotional effects Physical exhaustion leading to emotional concerns Anxiety over the next seizure Concern by parents about the impact on social relationships Due to feeling different from peers Are we being to responsible or not responsible enough Following the treatment regimen and changes to the medication regimen Work hard to accept the illness

9 Long-term consequences Long-term consequences Financial problems Marital problems Work problems Continued uncertainty and fear/worry Hospitalizations etc. Rollercoaster

10 Impact on siblings Can easily lead to sibling jealousy or rivalry Fear of developing seizures Can feel that they caused their sibling s disorder Feel they need to protect their siblings, which comes with a lot of pressures Balance between anger and guilt

11 Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face

12 STRESS!!! STRESS!!! STRESS!!!

13 What is stress? An emotional and physical way in which we respond to pressure Stress can cause both physical and emotional symptoms Effect of stress varies from person to person

14 How do we manage stress? Managing stress involves learning about: How stress affects the mind and body How to identify the warning signs of stress How to develop good stressmanagement techniques If the stress builds and you are not getting any relief you need to know when to seek professional help

15 What to look out for: Depression Sadness Isolation Sleep and appetite changes Hopelessness and helplessness Irritability/ anger Decline in work performance Spend less time with friends Take less pleasure in activities

16 Depression(cont d) Increased crying Decreased attention and concentration Low self-esteem Express physical complaints Headaches Stomach pain

17 Anxiety Symptoms Excessive feelings of worry Exaggerated worry and nervousness Fidgety Restless Racing thoughts/ ruminate Attention and concentration problems Physical complaints rapid heartbeat sweaty stomach or chest pain feeling short of breath

18 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

19 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

20 Our working model Biology cannot be separated from other experiences Social context is essential to consider Change is part of each level of experience

21 What Parents Can do? How parents feel about dealing with seizures has a major impact on how their child feels about having seizures and their consequences

22 Coping Coping style A set of cognitive, emotional and behavioral responses to stress Consistent use of specific strategies for managing stressors Style depends on available coping resources: Problem-solving skills Health Energy level Social support Family coping patterns

23 Ways to categorize coping Approach vs. Avoidance Problem-focused vs. Emotion focused

24 Coping! What can you do 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 Support groups Professionally led peer support groups (i.e. through Dravet Foundation events, etc) Internet based support groups Religious support groups

25 Ways to improve coping and reduce stress. What can you do? Educate yourself, information is power Take time out for yourself Walk Exercise Read Cook Warm bath

26 Coping! What you can do (cont d) Do NOT neglect your relationship with your significant other(s) 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

27 What parents can do (cont d) Be honest Discuss seizures and epilepsy openly with your child and answer their questions Encourage them to ask their providers specific questions and parents should do the same Encourage continued peer interactions/social gatherings Build on things your child likes and can do Encourage a special hobby or special skill Emphasize the positive Praise success

28 What parents can do (cont d) Avoid discussing the burden of the seizures on the family in front of the child Monitor sibling reactions (they are often forgotten) Try not to avoid situations/events because of seizures Encourage your child to be open about their seizures Continue with the same discipline strategies as pre-seizures or with siblings Do not become more lax in your discipline due to the seizures

29 What parents can do (cont d) Stay in communication with the school Communicate the type of seizures with school staff and supports they may need Seizure precautions Individualized education plans (IEP s or 504 plans) Monitor academic performance/learning problems Ensure medications are being administered properly, if necessary Teachers can help create an open atmosphere and educate other students Ensure a positive experience Avoid bullying/stigma/victimization

30 What Parents can do (cont d) Accept that total control of the situation is NOT possible Emphasize or focus on the positive Communicate with those around you who are helping with your child s care

31 Ways to manage stress (cont d) Relaxation strategies Deep breathing Progressive Muscle Relaxation Guided visual imagery techniques Hypnosis Yoga

32 Stress reduction strategies (cont d) Scripted Relaxation strategies Deep breathing Progressive Muscle Relaxation Guided visual imagery techniques Hypnosis

33 What parents can do (cont d) Monitor changes in mood and behavior Be attentive to symptoms of depression and anxiety If concerned talk with your PMD and ask if a psychological/psychiatric evaluation is warranted

34 Treatment options Individual treatments/therapy Family therapy Neuropsychological evaluation Psychotropic medications

35 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

36 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

37 Self Help Books (cont d) Stress Davis, M., Eshelmen, E.R. & McKay, M. (2008). The relaxation and stress reduction workbook. Oakland, CA: New Harbinger

38 What can you do? Focus on the joys and accomplishments of today a smile, interest in a favorite activity, 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.

39 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.

40 Thank you Contact Information Tina Drossos, Ph.D. University of Chicago