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Welcome to the USC UCEDD Webinar Series for Individuals with Disabilities & Parents

funded by grant #90DD0695 from

the Administration on Intellectual and Developmental Disabilities (AIDD) Administration on Community Living

July 28, 2016

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Your Moderator

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Susan Kanegawa USC UCEDD Family Support Coordinator skanegawa@chla.usc.edu www.uscucedd.org

The USC University Center of Excellence in Developmental Disabilities at Children’s Hospital Los Angeles (USC UCEDD) is one of 68 UCEDDs funded to promote systemic change, advocacy, and capacity building in states on behalf of individuals with, or at risk for, developmental, behavioral and/or special health care needs, and their families. The USC UCEDD Webinar series is designed to educate the community about current policy issues which impact the lives of people we serve and their families. Our primary audience is individuals with special needs and their families. At this time, our webinars are in English only. We are exploring methods to make this series available in other languages in the future.

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Structure and Logistics

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Sandy Magaña, PhD Professor of Disability and Human Development at the

University of Illinois at Chicago

July 28, 2016

Taking Care of Yourself as Caregiver

of a family member with a developmental disability

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About Dr. Sandy Magaña

Dr. Magaña is a Professor of Disability and Human Development at the University of Illinois at Chicago, and the Director of the Family Support Research and Training Center. Email: maganas@uic.edu Website: Family Support Research and Training Center at the University of Illinois at Chicago http://fsrtc.ahslabs.uic.edu/

Dr. Magaña’s research focus is on the cultural context of families who care for people with disabilities and mental illness, and the experiences of parents who have disabilities. Her concentration is on health disparities of minority caregivers, and diagnosis and treatment disparities for Latino and Black children with autism spectrum disorder, and on interventions to reduce health and service disparities.

The Family Support Research and Training Center (FSRTC) is a collaboration of researchers and organizations whose focus is on gathering and generating knowledge about the needs and experiences of families who provide support to children and adults with disabilities. The FRSRTC aims to bridge resources and information across diverse groups to develop policies and practices related to family support.

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The FSRTC is housed at the University of Illinois at Chicago’s Institute on Disability and Human Development (IDHD), which is the University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) for the State of Illinois.

Importance of caring

for yourself

Signs of stress and depression

Including others in

caregiving

Setting health goals for yourself

“By Caring for Myself”

Program

Overview of the Webinar

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Importance of caring

for yourself

Signs of stress and depression

Including others in

caregiving

Setting health goals for yourself

“By Caring for Myself”

Program

Recognizing the importance of caring for yourself as a caregiver

Story about Joanna

• Joanna is married, has a 4 year old son with autism, and two typically- developing daughters who are 7 and 10 years old

• Listen to the story about Joanna’s stressful situation

• Let’s think about the ways that Joanna’s situation may be unique, and ways that it is similar to other parents’ experiences

– Joanna’s son is young and required speech therapy

– Parents of adolescents or adults with I/D.D. may face other unique challenges

• We will revisit this story when discussing ways to reduce stress

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Research on family caregivers of children and adults with IDD

• Research shows that family caregivers compared to non-caregivers – face higher rates of depressive symptoms—this was found across

several studies – Have higher rates of obesity, high blood pressure, and arthritis

(based on a study in Illinois) – Poorer self-rated health status

• Research based on a national data set shows that African American and Latino caregivers of children with I/D.D., compared to their non-caregiving counterparts – Face higher rates of depressive symptoms, heart problems, arthritis,

and diabetes – Are less likely to see a doctor for their own health care

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By caring for myself, I can better care for my family

• We developed a health intervention focused specifically on caregivers’ health. I will share with you two of the sessions we cover in this intervention about recognizing and reducing stress

• In working with caregivers, we find that many view taking care of their child or adult with I/D.D. as their primary responsibility

• As in Joanna’s story, this can include many tasks and roles, such as taking him or her to the doctor or for activities, managing his or her schedule, helping with and teaching self-help skills, and managing challenging behaviors

• Research shows that managing challenging behaviors is one of the strongest factors in high levels of stress among I/D.D. caregivers

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• As a result of the caregiving responsibilities, caregivers often do not:

– Take free time to relax – Find time to do things they like to do – Go out with friends and other loved ones

• They often feel it is selfish to do these things, but consider the “airplane” example: – You may have heard the flight attendant say that in case of emergency,

put the oxygen mask on yourself first and then on your child or others – Why do they make this recommendation?

• Think about what you do to take care of yourself on a regular basis

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Importance of caring

for yourself

Signs of stress and depression

Including others in

caregiving

Setting health goals for yourself

“By Caring for Myself”

Program

Recognizing signs of stress and depression

Recognizing signs of stress

• Stress can result from any situation or thought that makes you feel frustrated, angry, or anxious. What is stressful to one person may not be stressful to another

• The body has a natural response to stress and releases stress hormones to protect you

• Your body reacts when you are in danger, warning you to get out of harm’s way— for example, a car coming at you when you are crossing a street

• Your body does not differentiate the different types of stressful situations

• A pile-up of stressful situations can cause health problems

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• When your body activates the stress reflex:

– Your arteries contract, and this reduces the blood flow to the heart

– Your blood pressure rises

– Your blood becomes thicker, increasing the likelihood of developing a blood clot

• Too much stress can:

– Cause heart rate problems, heart attacks or other health problems

– Weaken the immune system, increasing the likelihood of colds and infections

– Trigger asthma attacks, arthritis, and intestinal problems

– Affect the way you manage everything in your life

– Contribute to anxiety, depression and anger

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Ways to reduce stress • Let’s think back to Joanna’s story. What are ways to help her reduce

stress in her situation?

– One key way would be to involve other family members in the responsibilities so she isn’t doing it all herself:

• She could ask her husband to help her with the housework

• The children could help by picking up their things and washing dishes

• Her husband could help with the son at night, or with the older children in the morning, or with preparing the lunches

– Joanna could:

• Leave the housework for the next day

• Try to schedule appointments at a later hour

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• No one can avoid all stressful situations, but we can learn to manage stress

– Use respite services if you have them—to take time to do things you want to do

– Get professional help for specific needs such as challenging behaviors

– Maintain a healthy lifestyle including physical activity, healthy diet and adequate sleep

– Avoid smoking, too much alcohol or substance abuse

– Don’t be afraid to ask for support!

– Engage in a mindfulness activity such as a breathing exercise, yoga, or meditation

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Depression

• Too much stress can lead to depression; however it is not the only contributing factor

• Depression may be described as feeling sad, blue, unhappy, miserable or down in the dumps

• Most of us feel this way at one time or another, but it is usually short-lived

• True clinical depression is a mood disorder in which feelings of sadness, loss, anger or frustration interfere with everyday life for extended periods of time

• Clinical depression requires treatment—it is important to seek out mental health care

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There are different types of depressive disorders

• Major Depressive Disorder: the symptoms are severe and interfere with your ability to work, eat, sleep, etc. A major depressive episode may occur once in a lifetime, but a person can have various episodes

• Dysthymic Disorder: the symptoms of depression last a long time (2 years or more) but are less severe than in major depressive disorder

• Postpartum Disorder: Generally, it is a major depressive episode within the first month after giving birth

• Seasonal Depression: This type of depression occurs during the winter months, when the hours of sunlight decrease, and generally disappears during spring

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Signs & symptoms of depression • Feeling depressed or down almost every day

• Losing interest or not being able to enjoy the things you used to enjoy

• Changes in appetite and/or weight (eating either less or more than you used to)

• Sleeping problems (difficulty falling asleep, waking up often, waking up very early and unable to fall asleep again, sleeping too much)

• Changes in speed of movement (either being too restless or moving too slowly)

• Feeling tired all of the time

• Feeling undervalued or guilty

• Problems thinking, concentrating, or making decisions

• Having thoughts of death or of hurting oneself

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Seeking help

• If you have 5 or more of the symptoms described, it is important to see a health care professional

• Depending on your health insurance or resources you may:

– First see a primary physician who can treat you or refer you to a mental health professional

– Contact a mental health agency such as your County Mental Health

– Go to a government-funded health care clinic to see a medical provider who can treat or refer

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Importance of caring

for yourself

Signs of stress and depression

Including others in

caregiving

Setting health goals for yourself

“By Caring for Myself”

Program

Including others in caregiving

Including others

• Remember Joanna’s situation--she needed to include her family members in daily tasks

• Including others can go beyond your immediate family

• Let’s think about your context:

– Make a list of the top three tasks or problems that you need help with

– Next let’s think of who in your life provides some sort of support to you (we will explore this with the ecomap)

– Last, think about who you could ask for help with the above tasks or problems

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You and your

immediate

family

Culture or

religion

Health

Care Work

Social

Services

Family

members

Recreation

Friends

School

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Importance of caring

for yourself

Signs of stress and depression

Including others in

caregiving

Setting health goals for yourself

“By Caring for Myself”

Program

Setting health goals for yourself

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Name __________________________________ Date _____________

Healthy Habits Goal Contract Your behaviors help you to achieve good health. It is important to have clear goals for yourself. Set one goal now and make it specific, measurable, easy and important for you. After you have achieved one goal, move on to another goal.

Exercise ● Healthy Eating ● Relaxation ● Health ● Asking for

Checkups Help

Important Area to Change: _____________________________________ Specific Goal: ________________________________________________ Action Plan: _________________________________________________ Obstacles: ____________________________________________________ Solutions: ____________________________________________________

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Importance of caring

for yourself

Signs of stress and depression

Including others in

caregiving

Setting health goals for yourself

“By Caring for Myself”

Program

“By Caring for Myself” Program

“By Caring for Myself” Program

• Some of what we discussed was part of a health intervention we designed for Latina caregivers

• The full title is “By Caring for Myself, I Can Care Better for My Family”

– Because Latina mothers often feel caring for oneself is selfish, it was important to include the family in the title

• We use promotoras de salud or community health workers to deliver the intervention through either home visits or group sessions

– The promotoras are mothers of children with developmental disabilities

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Promotora

*Mother of child with

I/D.D. Share

common identity with participant

Health educator in

Latino community

Respected and visible

Bilingual: Communication

Bridge

Understand host

community

* Unique to our study

• Session One: Taking care of oneself & pre-test

• Session Two: Health care

• Session Three: Well-being activity

• Session Four: Nutrition

• Session Five: Exercise

• Session Six: Stress & depression

• Session Seven: Including others

• Session Eight: How to sustain growth & post-test

“By Caring for Myself” Curriculum Eight-week health education program

Using “By Caring for Myself”

If you are representing an agency that would like to use the program, we can do a “train the trainer” program.

If interested, contact me:

Sandy Magaña,

UIC Department of Disability and Human Development

(312) 355-4537

maganas@uic.edu

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Resources

• Free booklets in English and Spanish about depression:

https://www.nimh.nih.gov/health/publications/depression-listing.shtml

• Information on stress:

https://www.nimh.nih.gov/health/publications/stress/index.shtml

• Los Angeles County Department of Mental Health

http://dmh.lacounty.gov/wps/portal/dmh

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Poll: Do you now have a better understanding

about taking yourself as a caregiver?

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