TORONTO — Reading a storybook about accepting differences may reduce anxiety and boost self-esteem in children with a visible skin condition, early results from an ongoing study suggest.
So far, “the study shows that these books are valuable to patients and families,” said one of the study authors, Dr. Sonia Havele, a pediatrician and dermatologist at Children’s Mercy Hospital Kansas City in Kansas City, Missouri. Medical news from Medscape.
“There are resources available to help children manage their skin conditions, but we underuse them,” she added. “And one reason we underuse storybooks is because we just don’t know what’s out there.” For the study, researchers received funding to purchase 18 “creative and well-thought-out” storybooks about skin conditions in children that were reviewed by at least two pediatric dermatologists before being selected. This is just a sampling of the books available on the subject, Havele said.
The study results were presented as a poster at the 2024 Annual Meeting of the Society for Pediatric Dermatology (SPD) from July 12 to 14.
Children with visible skin conditions such as port-wine stains, capillary malformations and congenital birthmarks may be subject to teasing and bullying at school and the conditions can also affect their quality of life.
Beauty and the birthmark
The books include one called “Beauty with a Birthmark” and another called “My Hair Went on Vacation.” An illustrated book called “Just Ask: Be Different, Be Bold, Be Yourself” by U.S. Supreme Court Justice Sonia Sotomayor offers tips on how to answer common questions about a person’s appearance.
Havele said Sotomayor’s book “encourages children, their siblings, their classmates to ask questions, and it teaches patients not to be afraid of those questions and to really commit to educating their peers and their family members.”
“Kids are just curious,” she added. “They make comments like, ‘Hey, what’s that spot on your face?’ Or they ask about vitiligo because they’ve never seen anyone with vitiligo before.”
To evaluate the psychosocial impact of these types of books on children with visible skin conditions, Havele and her colleagues designed a study that included patients ages 2 to 12 who were struggling with issues related to self-esteem, acceptance, coping or bullying. Parents will be provided with a relevant storybook to read at home with their child in a “safe and comfortable environment” and “at their own pace and time,” Havele said.
There is a QR code inside the book to access the validated Children’s Dermatology Life Quality Index (CDLQI). Families complete the survey at the beginning and provide feedback after reading the book. Researchers collect information on demographics, age, gender, and skin conditions, including atopic dermatitis, alopecia areata, vitiligo, hemangioma, and port-wine stains.
The response rate so far is 34 percent and almost 80 parents have completed the survey with their child, Havele said.
At baseline, the quality of life of many children was either moderately or severely impaired (45% achieved a CDLQI score ≥ 6).
After reading the book, about 80% of parents reported that it had a positive influence and about 20% said it had a somewhat positive influence on their child’s self-image or confidence. Almost 80% agreed and the rest somewhat agreed that it had encouraged their child to accept differences.
Most respondents also said the book helped the parent and the child cope with the child’s illness. “So overall it’s been a really positive response,” Havele said. “We can show that these books are valuable in a more scientific or objective way.”
This is perhaps not surprising. Havele was referring to a more formal bibliotherapy (book therapy) that has been studied in other pediatric populations, including cancer patients and those who have experienced trauma.
Great space
Pediatric dermatologists are well positioned to improve the lives of their patients with skin problems. “We see the impact of visible skin disease on children all the time,” Havele said. “The visit to the dermatologist is a great place and opportunity to introduce families to these books and potentially help them talk to their child about the skin disease.”
In addition to prescribing therapy, “we are also accompanying these children through an emotional journey and I think it is very helpful to give them the tools they need for that emotional journey,” she added.
Such books would have been a great help to Havele herself. Growing up, she suffered from severe neurodermatitis that covered a large part of her body. “Having such a source would have helped me to better deal with my reality of being different from everyone else.”
She hopes to create a database of these resources so other providers can refer patients to the list of books. Other books include “The Itchy-saurus: The Dino with an itch that can’t be scratched,” “Hair in My Brush” and “I am Unique!”
Havele had not provided any relevant information.
