The unpredictable nature of cardiomyopathy creates unique social and emotional issues for families with a diagnosed child. Parents may feel a range of emotions such as fear, anxiety, sadness, anger, and guilt when they learn that cardiomyopathy is a chronic disease. These emotions are natural, and many parents with a chronically ill child experience the same feelings. Parents should give themselves time to accept their new situation and find ways to cope with the unexpected changes to their family.
How parents manage their own emotions can have an effect on how other family members deal with cardiomyopathy. Common feelings experienced by a diagnosed child include fear, anxiety, anger, sadness, and depression. Children with cardiomyopathy may struggle with feeling “different,” socially isolated, and restricted in their activities. As challenging as these feelings are, most children do adapt to their diagnosis and do well in the long term.
Effective ways of coping, for both parents and children, include learning about the disease, connecting with disease specialists, and finding a support network. Also, practicing self-care, maintaining open communication, and identifying individualized coping strategies are all extremely important to the well-being of the family.
Learning about the Disease
When grappling with a serious and complex disease, parents usually have a strong desire to educate themselves on the disease. This includes learning about pediatric cardiomyopathy, their child's diagnosis, tests that have been performed, and available treatments. Information from reliable sources can ease their fear of the unknown and provide reassurance.
The Children’s Cardiomyopathy Foundation (CCF) offers a wide range of educational materials in the About the Disease section and Family Resources section of the website. CCF’s materials include easy-to-understand videos and booklets that have been reviewed by physicians. For children who need to be hospitalized, CCF offers a Hospital Resource Guidebook, which provides practical tips for before, during, and after hospitalization.
Connecting with Specialists
Understanding the disease also involves getting connected to specialists in pediatric cardiomyopathy. As parents obtain more information about the disease, they are better equipped to advocate for their child’s care. An interactive partnership with the medical team is important for developing trust and confidence.
CCF offers webinar recordings and transcripts of Expert Q&A sessions through CCF’s online community to help parents connect with specialists in the field.
Finding a Support Network
Connecting with others who have been in the same situation is encouraging and comforting. CCF offers various family support services, including the online community CCF Connect. For more information, visit CCF’s Family Support Services page.
Family counseling is often overlooked but can be helpful for families dealing with the anxieties of living with a chronic and potentially life-threatening disease. A counselor, who works with families affected by a chronic illness, can provide helpful coping tips. Counseling may involve the whole family, parents, siblings, or the diagnosed child individually. It can be either private or in a group.
Siblings may experience feelings of jealousy, anger, loneliness, or guilt because of disruptions in the family routine and extra attention given to their affected sister/brother. Some hospitals offer support programs for siblings of chronically ill children. These programs are usually offered through the social work or child life departments.
It is easy for parents to forget to tend to their own physical and mental health when the focus is on their child’s medical care. However, it is vital for parents to take care of themselves so they are able to fully support their child and the rest of the family. This means arranging some personal time, getting enough sleep, and eating balanced meals. Finding an outlet for stress is key, and this can include, exercise, sports, cooking/baking, or devoting time to a hobby.
Maintaining Open Communication
Acknowledging the emotional impact of the disease on each family member is important. Parents can create an environment that supports shared feelings to help each family member feel validated. Children should be encouraged to talk freely about their feelings with a trusted adult when they experience emotions that are difficult to manage. Talking about sensitive topics in a calm setting is helpful with younger children. Young children may ask difficult questions such as "What happens if the doctor can't fix my heart?" and “Am I going to die if I don’t get a new heart?" Parents should answer with a simple but truthful statement instead of giving a detailed response.
Older children may be reluctant to discuss their school or social problems related to cardiomyopathy. Parents may notice a change in their child’s behavior, such as grouchiness, lack of interest, or withdrawal from family and friends. In this situation, parents should talk to their child about what they are experiencing. They may need to be reminded that they are not alone in their feelings, and that there are other children with the same diagnosis struggling to adjust also. If mood and outlook does not improve over time, a child psychologist or counselor should be consulted.
Connecting with Peers
Children with cardiomyopathy may face different social and emotional concerns beyond the medical issues as they approach their pre-teen and teen years. This may relate to issues such as social development, family and social support, substance use, and reproductive health.
At this age, it is important to a pre-teen and teen’s self-image to feel a part of a peer group and not be isolated because of their illness. Although there may be activity restrictions, they should be encouraged to do some exercise and recreational sports, as long as it has been cleared by his/her cardiologist.
Some teens find that taking responsibility for their condition allows them to feel more in control and this helps with their coping process. Care responsibilities may include remembering to take daily medications, living a healthy lifestyle, attending follow-up appointments, and learning to self-monitor during physical activities. CCF offers different Youth Programs for pre-teens and teens to connect with each other.