Living Through the Diagnosis
No matter how you hear it – whether it's from a pediatrician, a genetic counselor, or an emergency room doc – the news that your child has cystic fibrosis is almost always overwhelming. Despite the flurry of specialists, friends and family members uniting to support you following your child's diagnosis, it may be impossible to escape a parent's anguish in those early weeks and months.
“There's not a parent out there that wouldn't have feelings of grief and loss,” says Al Lew, M.S.W., a social worker at Seattle Children's Hospital. Lew is part of the pediatric team that cares for cystic fibrosis patients in the hospital's clinic. He says that grieving the loss of perfect health for your child is to be expected. Predictable or not, however, loss is never easy.
The good news is that, like so many devastated parents before you, you are likely to journey through this early diagnosis phase to a place of hope and happiness, a place where your family builds memories of love, laughter and togetherness – despite cystic fibrosis. You just may need a little help along the way.
Walking gingerly through the shock
Researchers point to the effectiveness of early psychosocial intervention for parents following the diagnosis of cystic fibrosis in a child. A 2001 study by Huff and Dobbs5 underscores the important role that nurses, social workers and psychologists play in helping parents learn how best to cope with the sorrow that can follow diagnosis.
Many times parents of the newly diagnosed child can slip into depression unnoticed and unseen by the bevy of health care providers and concerned family members that rally in response to the disease. Lew says it's not surprising. Not only are all eyes on the patient, parents are containing what's going on for them and “appropriately focusing on their child,” making it easy for signs of early depression to be overlooked.
Dr. Alexandra Quittner, child division director in the Departments of Psychology & Pediatrics at the University of Miami, recently completed a 2008 clinic-based study showing 30 percent of parents and caregivers of children with cystic fibrosis experience depression6. How caregivers cope, says Quittner, can have an impact on the kind of medical care patients receive.
“Depression has been shown to be linked to poor adherence,” says Quittner. She adds that depressed mothers are more likely to miss treatments and doctor appointments. For that reason, the researcher encourages clinics to screen for caregiver depression using the Hospital Anxiety and Depression Scale (HADS), a tool she says takes a short five minutes to administer.
Be on the Lookout
Psychosocial experts say that following diagnosis some parents can expect an emotional response similar to bereavement – shock, denial, anger, adaptation and acceptance. Should any of the following responses embed themselves in your daily life and stay, however, you may want to consult with your primary care physician for a referral to a counselor who can help you work through what may very well be depression:
- Loss of interest in normal daily activities
- A sense of sadness
- Difficulty concentrating
- Difficulty sleeping
- Crying spells for no apparent reason
- Problems making decisions
Dr. Lynn Walker is a professor of pediatric medicine at the Children's Hospital at Vanderbilt University Medical Center in Nashville, Tennessee. Walker says it is essential that parents not view asking for help as some kind of failure.
“I see the mind and body as connected,” says Walker, who is also the Director of the Division of Adolescent Medicine and Behavioral Science. “Depression has physical, emotional and behavioral symptoms associated with it. It's an illness. If you had diabetes, you'd take insulin, wouldn't you?”
No one needs to weather depression, and its ensuing sense of isolation, alone. Your child needs you fully present and available. By taking care of yourself, you're also doing what's right for your child.
- 5 Alistar Huff and Hillary Dobbs; (2001), Psychosocial issues. Seacroft and St. James's University Hospitals, Leeds, UK.
- 6 Quittner, Alexandra; Barker, David H.; Snell, Carolyn; Grimley, Mary E.; Marciel, Kristen; Cruz, Ivette; (2008). Prevalence and impact of depression in cystic fibrosis. Current Opinion in Pulmonary Medicine, Vol. 14, pages 582-588.