Each year, approximately 750,000 children in the United States with special healthcare needs will transition from pediatric to adult care. A new study has found that less than half of them receive adequate transition care. The findings were published online in the journal Pediatrics by researchers at Vanderbilt University in Nashville, Tennessee.
The investigators interviewed clinicians who provide transition care, pediatric and adult healthcare providers of services for individuals with special healthcare needs, policy experts, and researchers, In addition, they searched online databases for information regarding currently available programs and resources. They also reviewed medical literature in regard to research on the effectiveness of transition programs.
The study authors identified 25 studies that evaluated transition care programs. Eight studies were conducted on diabetics, and five involved transplant patients. They identified an additional 12 studies on a range of conditions; no more than two studies investigated the same condition. Common components of care included the use of a transition coordinator, a special clinic for young adults in transition, and provision of educational materials.
The investigators conclude that the issue of how to provide transition care for children with special healthcare needs requires further evaluation. The research needs are wide-ranging, and include both substantive (the content of the care) and methodologic (how the transition care is provided) concerns. At present, there is widespread agreement on the need for adequate transition programs; however, there is no accepted way to measure the success of the transition process. The authors stress that it is crucial to establish consistent goals to build an adequate body of data to affect practice policy.
Special needs children comprise a vast array of disorders. They may have: mild learning disabilities or significant cognitive impairment; food allergies or terminal illness; developmental delays that they grow out of or remain in adulthood; occasional panic attacks or serious psychiatric illnesses. Despite the huge variety of disorders, the designation is useful for obtaining needed services, setting appropriate goals, and increasing understanding for a child and his or her stressed family. The following address only a portion of the wide variety of special needs children.
Medical issues for special needs children include serious conditions such as cancer, congenital heart disease, muscular dystrophy, and cystic fibrosis, as well as chronic conditions such as diabetes and asthma. Other special needs children suffer from congenital disorders such as cerebral palsy and dwarfism or and health issues such as food allergies and obesity. These children may require numerous evaluations, lengthy hospital stays, expensive equipment, and accommodations for their disabilities. Their families often must cope with frequent crises, uncertainty, and worry.
Special needs children with behavioral issues do not respond to traditional discipline. For example, children with conditions such as attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and fetal alcohol spectrum disorder require specialized approaches that are designed to their specific abilities and disabilities. If those approaches are not developed and used, children with behavior issues create havoc within their families at home and are seriously at risk for school problems. Thus, their parents must be flexible and creative.
Developmental disabilities are among the most devastating for a family to cope with. Diagnoses such as ASD, Down syndrome and cognitive disabilities often result in the children’s removal from the mainstream educational process; thus, parents must be advocates so that their children can obtain the services, therapy, schooling, and socialization they require.
Children with learning disabilities such as dyslexia struggle with schoolwork despite being intelligent. To obtain their full potential and avoid self-esteem problems, they require specialized learning approaches. Parents of learning-challenged children must be persistent both in working with their children and their schools that in order to improve their education.
