ZEBRA PROGRAM


Our Commitment to Mental Health

Caregivers of children with special health care needs, especially those whose children have emotional, behavioral, developmental, or life-limiting challenges, experience considerable strain and stress when it comes to caring for their child’s special needs. The enormous burden of caregiving can decrease a parent’s ability to provide care, and impact the health of the child, the parents, and the overall functioning family. To manage these challenges, parents report the need for mental health care for themselves and, or their children, but many of these families go without these services.  Understanding barriers to mental health care for families of children with special health care needs is critical to creating policy and practice solutions that will increase access to mental health care for families.

The E.WE Foundation is committed to normalizing mental health and to providing mental health support to families living with rare diseases, like Edwards Syndrome, medical complexities, and special health care needs.

Self Care

Taking care of ourselves, first and foremost, is essential. We all tend to put others’ needs before our own but it is crucial to remember, that we, too, are a priority. Self-care is something that everyone can benefit from practicing on a daily basis. True self-care is not self-centered nor selfish; it is simply keeping yourself the focus of your own life. It’s about paying attention to how you feel in each moment, communicating clearly, and speaking up for yourself.

Managing Mental Health and Emotional Needs

Complete comfort care and end-of-life solutions includes help with managing mental and emotional distress. It is important to treat emotional pain and suffering. Encouraging conversations about your feelings might help. You might want to contact a counselor. You are not alone. If you experience severe depression, anxiety, or other mental health challenges, talk with your healthcare provider.

Comfort Care

Comfort care is an essential part of one’s end of life journey. The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the wishes of the dying person and their family. We believe there are four areas of importance when facing the death of a loved one, especially a child – physical comfort, mental and emotional needs, spiritual needs, and practical tasks. We are here to support you. Always remember to consult your healthcare team to make sure these suggestions are appropriate for your situation.

Spiritual Needs

Comfort care and end-of-life experiences often lead to spiritual needs being just as important as physical concerns. Many people find solace in their faith while others may struggle with the idea of faith or spiritual beliefs. Praying, talking with a pastor or minister, reading scriptural texts, or listening to positive and encouraging music may bring comfort. We are here to help.

ZEBRA Support Groups coming soon!

Online support groups have the potential to improve the access and delivery of support to a wide range of people, including some who would not seek face-to-face support at all. We understand a person’s relationship with a doctor or other medical personnel may not provide adequate emotional support, and a person’s family and friends may not understand the impact of a disease or treatment. ZEBRA hopes to create a space of support among people with shared experiences while bridging the gap between medical and emotional needs.

You may be nervous when you join a new support group. Participating gives you an opportunity to connect with people who are likely to understand how you may be feeling. You may want to listen at first. Over time, sharing your own ideas and experiences may help you get more out of the group. Whatever you choose, we’re here to support you.

ZEBRA E-Support Groups are virtual and offers both privacy or anonymity. You can join one of our groups from the comfort of your home. From time to time we may offer educational opportunities, such as a guest doctor, psychologist, nurse or social worker to talk about a topic related to the group’s needs. To protect your privacy, registration for ZEBRA E-Support is required.

*A support group is not a substitute for regular medical care. Talk to your doctor about participating in a support group. If you think a support group is not a good fit for you, but you need help coping with your condition or situation, talk to your doctor about counseling or other types of therapy.

Source: U.S. Department of Health & Human Services, National Institute on Aging, https://www.nia.nih.gov | Support Groups, https://www.mayoclinic.org