5 things you may not know about your friend or family member who cares for a chronically ill child
Amazing advances in the diagnosis and treatment of chronic illness in children and adolescents have changed drastically in recent years. Diseases that were once fatal are now effectively treated and children survive at much higher rates than just a few years ago. Today, as a result of this tremendous progress, millions of children and adolescents in the United States now live with chronic illnesses and medical conditions including diabetes, cancer, neurofibromatosis, sickle cell disease, asthma, and chronic pain. A second order result of this progress is that more and more parents and families are confronted with chronic stress related to caring for their children on the long and difficult treatment journey.
5 things you may not know about your friend or family member who cares for a chronically ill child:
- Posttraumatic Stress Disorder (PTSD) Symptoms are experienced in 30-40% of parents with children who have cancer within six months of their diagnosis 1,2 That’s right… PTSD is normally associated with wounded combat veterans but parents and children on the long hard chronic illness treatment journey suffer terribly when dealing with similar symptoms.
- They are nearly twice as likely to report symptoms of burnout. 40-60% of parents with chronically ill children report symptoms burnout of syndrome, as expressed by symptoms such as emotional exhaustion, physical fatigue, listlessness, tension and cognitive difficulties.3
- Some good news perhaps? The divorce rate amongst parents with children diagnosed with cancer is no higher than the rest of us married folk.4 Albeit this study was conducted in Norway which may not be reflective of results in other parts of the world.
- 27% of parents caring for children with chronic illness like Acute Lymphoblastic Leukemia relocated residences in many cases out of necessity or financial hardship5
- 68% of parents decreased work hours and 46% of those parents who have decrease their work hours either quit or lose their jobs5
These illnesses and their treatment, present children and their parents with significant sources of chronic stress that can cause many challenges beyond the illness they battle including emotional and behavioral problems. Furthermore, many pediatric illnesses are exacerbated by stress encountered in other facets of children’s lives like school, extracurricular activities, and changes in relationships with friends, etc. It is therefore essential to understand the ways that children, adolescents and adults cope with stress to better illuminate processes of adaptation to illness and to develop effective strategies to enhance coping and adjustment while on this journey.
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Nothing prepares us for parenthood. There is no manual; there is no training commensurate with the commitment of being a parent and there is no required license. Parents want to protect their children, keep them safe and watch them grow into productive, happy adults with rich full lives. It can be particularly devastating to learn that your child has a chronic illness such as diabetes, cancer, neurofibromatosis, juvenile arthritis or any of the other chronic illnesses that comprises the very long list of such conditions that will have a large unpredictable impact on your child, your family and your future.
When on the journey of caring for a chronically ill child it is all too easy to forget about the importance of self-care. This is why it is important to seek and accept help. The best place to start is at your hospital’s Department of Social Work and Spiritual Care. Leveraging the expertise of professionals when on this journey can save families time, reduce frustration and give them access to resources and information that can be difficult to find without help. With information, support, and talking about their experience, most children and families are able to cope with the stress related to the extraordinary demands placed upon them during their journey of care.
About the author
Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/ or on email at tommynieman@gmail.com
If you want to learn more, need help or know someone who needs help check out the following resources:
Caregiver Action Network: http://www.caregiveraction.org/
Family Voices: http://www.familyvoices.org/
National Information Center for Children and Youth with Disabilities: http://www.nichcy.org
The National Cancer Institute: https://www.cancer.gov/about-cancer/coping/caregiver-support/parents
The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about
The LIV Foundation: http://www.thelivfoundation.org/
References to research:
- Posttraumatic Stress Symptoms in Parents of Children With Cancer Within Six Months of Diagnosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4243458/
- Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors: https://www.ncbi.nlm.nih.gov/pubmed/15131138
- Increase Prevalence of burnout symptoms in parents of chronically ill children (PDF Download Available). Available from: https://www.researchgate.net/publication/38088120_Increase_Prevalence_of_burnout_symptoms_in_parents_of_chronically_ill_children
- Child’s cancer does not raise divorce risk: Reuters Article written by Amy Norton that references a broad study published in the Journal of Clinical Oncology, online December 28, 2009. http://www.reuters.com/article/us-cancer-divorce-idUSTRE6073GA20100108
- Family Life Events in the First Year of Acute Lymphoblastic Leukemia Therapy: A Children’s Oncology Group Report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282930/
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