Finding Your Support Community
A new medical diagnosis often comes with more questions than answers, as well as a flood of emotions. As a caregiver to a child who has special needs or a complex medical condition, it can be helpful to find a community of supportive people who understand the challenges you have faced or will face while caring for your child. With the rise of social media and other web-based resources, information has never been easier to find and making contact with others is a breeze. But how can you be sure that you can trust the information or people with whom you are connecting? In this guide we will share some tips on how to find information and a community of support when your child is diagnosed with a chronic medical condition.
Benefits & Risks of support groups
Support groups are powerful resources that can help you work through the emotions you feel as a caregiver. Unlike a one-on-one therapy session with a counselor or other mental health professional, support groups involve sharing and listening in a group setting with others who have challenges similar to your own. Being a caregiver to a child who has special needs, a major medical challenge, or who is not developing in the same way as their peers can cause feelings of isolation and loneliness. In a support group you may find a shoulder to lean on, a listening ear, and someone who understands the everyday challenges of walking a journey that is similar to your own.
While support groups can be a great resource, participating in one is not without risk. The following resources can help you understand the value as well as the risks of participating in a support group online or in person.
This guide from the Mayo Clinic discusses some of the different types of support groups that exist, and the risks and benefits you can find by reaching out and expressing yourself in a support group.
This article from Help Guide, a nonprofit organization that produces mental health support resources, looks at myths and facts associated with support groups and offers a list of “red flags” to look out for when attending or participating in a support group.
Finding the Support Group that’s right for you
Locating a safe and reliable support group with caregivers who have similar lived experiences to your own can be challenging, especially if your child’s diagnosis is rare or uncommon. Talking to your child’s medical team about your own emotional support needs can be a great place to start; they may have suggestions for special needs support groups that are attended by the parents of other families they treat. You may also want to consider finding a mental health professional who can help you to work through the complex emotional challenges related to being a caregiver. Let them know that you are interested in pursuing group or peer support, and they can provide you with resources related to your specific needs.
“Listening to someone else verbalize the things that were going through my head for weeks, made me feel normal … something I hadn’t felt since before she was born. ”
If you are conducting your own search for a support group, the following tips and resources may help you find the right group for you.
Faith communities, hospitals, local disability service providers, and libraries are common places to find in-person support group activities. If you are looking to connect with people in a face-to-face environment, these community organizations are a good place to start. Check the organization’s website or social media for information about groups they offer, or call and ask directly if this is a service they provide. Before attending a meeting read through the group description and any printed information. If you attend the meeting and don’t feel it’s a good fit for your need, ask the group facilitator if they have suggestions of other local support groups.
Communities of faith often welcome individuals outside of their congregation to participate in support groups. If you decide to attend a group at a church or led by a religious leader, consider how the opinions and beliefs of others in the group may impact the topics of conversation you will encounter. Don’t automatically exclude a group that meets in a church, synagogue or mosque just because your personal beliefs do not match the venue. You may find a new community of support in an unexpected place!
Search national organizations and well-known nonprofit entities for online and in-person support groups. Large organizations may have online support offerings that connect you with other caregivers around the world, or may have local chapters with in-person meetings near you. Use the keyword “support group” to search the RedTreehouse.org database for a list of organizations that may offer support group opportunities of interest to you. Among the listings you’ll find organizations like Project NICU (which offers online support groups for parents of children who have had to spend time in the Neonatal Intensive Care Unit), Parent to Parent USA (a social network for families of children with special needs), the Children’s Brain Tumor Foundation (which offers support groups for families based on type of pediatric brain tumor and varying needs at different stages of disease), and Momcology (for caregivers of children with all types of cancer).
Peer Support for Children
Like you, your child may have strong feelings and emotions related to their medical diagnosis or special need(s). Finding a supportive peer group with similar lived experiences may be helpful to them as they navigate life in ways that may look different from the friends they see on a daily basis.
This article from the Children’s Hospital of Philadelphia can help you to discern the warning signs of anxiety and depression in a child with a chronic illness, and offers suggestions on how to pursue mental health treatment and support if you have concerns about your child.
Option B is an organization that offers resources, including social support networks, to help those experiencing adversity to build resilience. You or your older children can join a large discussion group online, or request to be connected with a small group of individuals who meet regularly in a virtual setting.
Siblings of children who have complex medical or other special needs are also at high risk for mental health challenges. This guide from Red Treehouse has a variety of sibling support resources that may be helpful to you if you have other children at home.
How to Spot Misinformation
As you begin to build relationships with people you meet in support groups or through special-interest social networks, you will likely find yourself receiving suggestions and advice on how to manage your child’s care. While peer support can be invaluable, it is important to remember it is just that: support from peers. While the people you are connecting with have a wealth of lived experience and knowledge related to caring for someone with a particular condition, they are not medical professionals. Even if they are, they do not have full access to information about your child’s specific case. It is important to discuss any medical advice received in a support group with your child’s medical team before making any changes to their care. The following tips and resources can help you to discern the validity of information received in a social setting or found online.
This article from Lancaster Health offers tips on identifying false health information. Spot articles that are inaccurate or out-of-date by taking the time to look at things like the date the article was published, researching the credentials of the author, and reviewing the organization or source that published the article.
Lurie Children’s Hospital in Chicago has assembled a list of health news sites and organizations that their physicians consider to be reputable resources. If you’re given a news article, try searching the topic on one of these listed sites to see if the information you have received from a friend matches the information listed on one or more of these sites.
This list from the University of Washington’s Aging Well With a Disability fact-sheet series, has tips for sniffing out scams and advice on how to share and discuss health information with your friends and healthcare providers.
Having trust and confidence in your child’s medical team is extremely important. If you do not feel entirely comfortable with the care your family is receiving, it is okay to find a new doctor. This list of tips from the U.S. Department of Health and Human Services includes a list of questions you should ask yourself after seeing a medical professional.
Whether or not you trust your doctor and agree with the diagnosis and treatment plan presented for your child, it is always okay to get a second opinion. This guide from the Cleveland Clinic can help you figure out when seeking a second opinion might be a good idea.
Anytime you receive new information related to something as important as your child’s health, it is important to pause and consider the validity of the information you just received. Ask these questions, adapted from a resource guide from the Cornell University Library, of any medical information you receive from a non-medical source.
Who published the article? Click away from the story to learn more about the organization that published the information. If you are sent a screenshot or a picture of an article, use a search engine to find the headline and determine who first posted the information. Do they publish health related news often? Are they on a list of trusted health news sites from one of the resources above?
Did you read more than just the headline? Headlines are designed to grab your attention. Be sure to read the whole article to determine if the information could apply to your situation.
Who is the author? Do a quick search on the author. Do they have medical credentials of some kind? Have they written other articles on this topic?
Did the author include supporting resources? If the article includes links to other sources, click on those links and read what those sources actually have to say on the topic.
What is the date on the article? If the article is more than a few years old, try to find a newer article that supports the information.
Is it a joke? Satire and jokes can often be mistaken for real news. Research the site and author to be sure.
Does the article support your own belief or opinion? It always feels good to have someone else back up your personal beliefs, but those beliefs can often blind us to false information. Be sure to fully investigate information whether or not it supports your opinion on a topic.
Do you have doubts? Ask a librarian to help you fact-check the information you have received, or bring the information to your child’s next medical appointment. If your child’s doctor is immediately dismissive of the information, ask them to help you understand why they don’t agree with its validity.
Additional Resources and Support
The following guides on RedTreehouse.org may have information that could be of interest to you as a caregiver to a child with a special need or medical challenge.
Written by: Theresa Maier, RedTreehouse.org Content Contributor. Theresa is the mother to a child with developmental disabilities, including Autism Spectrum Disorder.