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Why Caring for a Chronically-Ill Child is Often Difficult for Many Parents

Although treatments for children’s chronic illnesses have made such diseases manageable, affected parents still struggle with managing care of a sick child. Recent studies indicate that parents are finding it difficult to maintain a balance between making their children take responsibility for their disorder or to remain completely in charge of caring for their children. Medical experts at the American Psychological Association say that letting go of a chronically ill child too soon could lead to under-supervision that in turn cause medical complications and subsequently, lead to hospitalization.

 

Psychologists say that while some parents tend to exercise too much control of their child, some parents tend to become over-involved to the point of stymying the development of their chronically-ill child. However, former APA president Dr. Suzanne Bennett Johnson, who is also a professor at Florida State University School of Medicine said that most parents who loosened control of a child’s primary care too soon, do so for the following reasons:

Lack of Understanding of the Child’s Illness

To help parents address problems encountered with the primary care of a child with chronic illness, a childrens doctor should make sure both the parent and child comprehend the severity of the health disorder and the potentially fatal result of under and improper treatment.

Researchers at Johns Hopkins University published a study in Pediatrics in 2003 in which they observed children suffering from asthma attending Baltimore elementary schools. They discovered in their study that poor communication between the parent/guardian and the physician leads their child’s underuse of asthma medications.

According to the Co-Director of the Johns Hopkins Adherence Research Center Kristin A. Riekert, PhD, it can be very hard especially when the symptoms of the child isn’t always present. Another factor mentioned as the main cause for poor communication was that the allocated time for the meeting with the physician wasn’t enough. Not enough for the physician to explain the child’s treatment and disease to their parents or guardians.

Parent Depression and Anxiety

 

A clinical study assessed 182 fathers and more than a thousand mothers of children that are chronically ill. Results of that study revealed that 55% of the mothers evaluated, satisfied the criteria for anxiety, while 33% were depressed. It was discovered that other contributors to the stress and isolation that they feel was the financial strain of primary healthcare costs, hospital visits and getting insurance in order to make ends meet. Furthermore, mothers who are anxious and depressed most likely do not get sufficient support from their partners.

Child Rebellion Upon Reaching the Age of Adolescence

Scientists say that when a chronically ill child reaches adolescence, it usually leads to poor adherence to primary care as their desire for independence and privacy grows. They start to get annoyed whenever their parents ask them to leave the door open in case of any medical emergencies. Some parents get tempted to leave their child alone, allowing medical mismanagement just to avoid any conflict with their child.   

Some parents believe that they need to lessen the number of times they have to remind teens to take medications when they’re not at home. Although, it is not recommended by psychologists as they do not see it as developmentally appropriate because most teens don’t usually see how ignoring their treatments can lead to serious consequences.