Caring for Children and Adolescents With Autism Who Require Challenging Procedures

Margaret C. Souders, Denise DePaul, Kathleen G. Freeman, Susan E. Levy

Disclosures

Pediatr Nurs. 2002;28(6) 

In This Article

Abstract and Introduction

Abstract

Providing nursing care for children with autism or autistic spectrum disorders (ASD) can be challenging. As part of a larger study of 62 children with autism ages 3-8 years (Coplan et al., 2001; Levy et al., 2001) that required difficult procedures, strategies were developed for providing care that incorporated theories and knowledge from the disciplines of nursing, child development, psychology, applied behavior analysis, and pain management. Applications of these strategies are illustrated through the process of a physical exam, phlebotomy, and intravenous (IV) insertion during a health care visit. The nurse can develop a plan of care to achieve the goals of the visit and optimize the quality of the care for the child and family. Interventions presented can be individualized to each child.

Introduction

The prevalence of children with autism or autistic spectrum disorders (ASD) has increased over the past two decades. According to recent studies, the rate of ASD [including autism, childhood disintegrative disorder, Asperger's syndrome, Rett's syndrome, or pervasive developmental disorder - not otherwise specified (PDD-NOS)] may approach 1% of school age children (Bertrand et al., 2001; Gillberg & Wing, 1999; Wing, 1996, 1997). This is a dramatic difference compared to previously published occurrence rates of 4-5 per 10,000 (Lotter, 1966). ASD is three to four times more prevalent in boys than girls and knows no racial, ethnic, and social boundaries (Autism Society of America [ASA], 2000). Reasons for the increased rates are multiple and may include increased awareness, commitment to early diagnosis and intervention, and other unknown etiologies. Research has shown that siblings of individuals with ASD have a 3% to 8 % chance of being diagnosed within the spectrum (Rodier, 2000). Health care professionals have increased exposure to this special population. Pediatric nurses will most likely encounter at least one child with ASD in their practice setting.

ASD recently has received greater media attention because of the increased prevalence and controversy about potential causes and effective treatment. Increased awareness is needed among health care administrators, service providers, and leaders in research. Families, support groups, and professionals are actively lobbying the federal government for research monies to investigate this brain-based developmental disability.

Children's Hospital of Philadelphia (CHOP) recently created a Regional Autism Center, and nursing plays a vital role in caring for these children and participating in research. During May of 1999 through February of 2000, a study of a 2 X 2 randomized, crossover double blind placebo controlled trial of a single dose of human synthetic secretin for 62 children ages 3-8 years of age with ASD was undertaken at CHOP. Findings of this study are reported in Levy et al. (2001) and Coplan et al. (2001). The study required procedures (e.g., venipunctures, IV insertions) that are difficult for this group of children due to their deficits in social affective skills; communication; language; and restrictive, repetitive behaviors. Few studies on medical compliance among children with ASD exist; therefore, nursing care interventions and management strategies were developed for the children and families who participated in the study, which included 310 physical examinations, 310 venipunctures, and 124 IV insertions. Theories and knowledge of nursing, child development, autism, pain management, psychology, and applied behavioral analysis were incorporated.

Children with ASD can have difficulties with new environments and changes in their normal routine. Components of a health care visit can be very stressful to the child, parent, and health care professional and painful procedures can leave lasting negative memories. These memories can have a significant impact on future visits resulting in behaviors such as tantrums and aggressions toward health care personnel. Information gained while conducting this study can be used with this population during a health care visit. Effective interventions and management strategies can facilitate a positive health care experience for all.

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