Responses of Parents and Siblings
Parents and siblings react to a child's chronic condition in ways similar yet distinct from those of the patient; and at times, the grief of a family member impacts the grieving process of the patient. The stage experienced by the parent or sibling may be complementary or contradictory to the stage the patient experiences. A diagnosis of a chronic condition can be as devastating to the family as the death of a child.
DISBELIEF AND DENIAL
Some parents initially react to the diagnosis of their child's chronic condition by doubting that the diagnosis is correct. Denial does allow family some time to buffer their initial response of hopelessness.
The practice of "doctor shopping" is common, in the hope of finding agreement with the family's denial of the chronic truth. If denial persists, doctor-shopping may prove to be both financially and emotionally costly.
Example: Mr. and Mrs. Bosko were told two months ago that their 6-month-old son was developmentally delayed. Since then, they have changed physicians twice and have referred themselves to a child development center, seeking reinforcement for their impression that the physicians were mistaken.
ANGER AND RESENTMENT
Parents experiencing the anger stage sometimes discredit their physician, or become angry with themselves or their child. Some parents place blame for their child's chronic condition on God, each other, or their physician. Parents might be reproachful of themselves when a child is born with congenital anomalies. Guilt is a very common response.
Siblings experience anger and resentment because most parental attention is now focused on the child with the chronic condition. Small children might wish the parents to return a disabled baby for a substitute. The emotional responses of anger and guilt persisting in the family unit, in combination to other factors like financial difficulties and exhaustion, fuels the higher divorce rate among married parents of children with chronic conditions. As many as 75% of these parents divorce within 5 years of a child receiving a chronic condition diagnosis (4).
Example: The Waterhouse's son has been diagnosed with leukemia. Mr. Waterhouse blames his wife for not taking their son for investigation of his frequent nosebleeds sooner. Mrs. Waterhouse feels her husband does not help enough with the child. They are divorced within 6 months of the diagnosis.
ANXIETY
Even before birth, parents develop expectations for their children and assume they will live full and happy lives. When children have a chronic condition, parents become anxious not only about the child's health but also about the child's future, as well as their own.
Hospitalizations, painful procedures, possibility of a shortened life, and the financial burden of healthcare all contribute to anxiety. Parents of a child with a chronic condition are at risk for becoming overprotective, further encouraging dependency and separation anxiety in their child. Additionally, parental anxiety is manifested by excessive concern about minor illnesses in generally healthy siblings.
Siblings often feel anxious about their affected sibling and/or become preoccupied with their own health as well. If parents are anxious, their children's anxiety can be reinforced and strengthened.
Example: The Zingles' only child has asthma that has required frequent hospitalizations. Mrs. Zingle calls her physician weekly about minor concerns and does not send her child to school if the weather is bad.
GUILT
Guilt feelings are common among parents and siblings of a child with a chronic condition. Parents often feel responsible for the child's condition.
Example: Mr. and Mrs. Caldwell's daughter was born with a cleft lip and palate. They feel this might have happened because they postponed seeking prenatal care until the last trimester of pregnancy.
Siblings might believe they have somehow caused the problem. Feelings of guilt arise from their own unkind thoughts and feelings secretly or openly directed at their sibling. Sibling disagreements are sometimes heated, and exchanges such as "I wish you were dead!" can leave a lasting impression.
Example: Kory is a 5-year-old boy who lives with Ella, his 10-year-old sister. Six days ago, Kory angrily told Ella during a squabble that he wished she would go away and never come back. Ella was involved in a motor vehicle accident two days later and suffered a traumatic brain injury. She remains in the ICU and comatose, and Kory is haunted by his previous statement. He believes he is the reason for his sister's accident.
Unwittingly, healthcare providers sometimes reinforce the negative feelings by unwarranted optimism and being overprotective.
Example: Kory is finally able to visit his sister, Ella, in the long-term care hospital a few weeks later. She has made some progress since moving from ICU, but she is still unable to walk and speaks only a few words. Her neurologist is making weekly rounds and tells Kory not to worry about his sister because they will have her "all fixed up" before she comes home. Kory is doubtful and only feels worse that he may never see his sister "normal" again.
DEPRESSION
Parents are often more depressed than their child because of their own awareness of what a particular condition means for their child. Their previous expectations for the child must now be altered, sometimes drastically. Social isolation from caring for a child with a chronic condition can exacerbate depression. Families struggle with creating lasting friendships with families who do not have children affected by chronic conditions.
Example: Ms. Eyal had started a college fund for her son before he was born. He was found at age 5 years to have intellectual disability. She feels that all their hopes and dreams for her son are over. She cannot bear to discuss her loss with her friends, who have "normal" children. Ms. Eyal's son is seeing many doctors and therapists, and she is thinking about using his college fund for his increasing medical bills. She worries if she'll have enough money to buy back-to-school clothes for him this year.
For more about emotional challenges experienced by these parents of children with disabilities, read this inspiring poem.
Emily Perl Kingsley, 1987
Photo by Photospin, Tulips and Windmills by Design Pics
ACCEPTANCE
Adaptive coping by the family is signified by increasingly competent management of their child's chronic condition, or if old enough, allowing the child to take responsibility for management of the condition. When adaptation is achieved, the chronic condition is no longer the family's primary focus of attention.
Example: Jeff Jones is a 17-year-old male with ADHD. His mother helps him set a reminder on his cell phone to take his medication each morning, but no longer directly supervises the dose. She still drives him to medication follow-up appointments, but he is the person who calls the clinic to schedule appointment.
