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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Intervention pilot for parents of children with autistic spectrum disorder
Ellen Giarelli1, Margaret Souders, Jennifer Pinto-Martin
1University of Pennsylvania, School of Nursing, Philadelphia, PA, USA.
Insights
A nursing intervention for parents of children with autistic spectrum disorder (ASD) showed no significant impact on stress or event impact in a small trial. Further research with a larger sample is recommended.
Area of Science:
- Pediatric Nursing
- Developmental Psychology
- Clinical Psychology
Background:
- Receiving an autistic spectrum disorder (ASD) diagnosis creates a crisis for parents, causing distress and urgency for services.
- Parents require immediate support and information post-diagnosis to navigate their child's care.
- Existing post-diagnosis support may not adequately address parental needs.
Purpose of the Study:
- To refine a nursing intervention for parents of children with ASD.
- To identify methodological improvements for future, larger studies.
- To test the effects of a post-diagnosis nursing intervention on parental stress, impact of event, and service utilization.
Main Methods:
- A randomized trial (n=31) compared a nursing intervention (usual care + 3 hours PNP contact) to usual care (1-hour consultation).
- Intervention focused on counseling, instruction, and treatment plan implementation assistance.
- Parental stress and impact of event (diagnosis) were measured.
Main Results:
- No statistically significant differences were found between groups in "impact of event" or "perceived stress."
- The lack of significance was attributed to the small sample size.
- A larger study is feasible and recommended.
Conclusions:
- A standardized nursing intervention is valuable for addressing parental information and counseling needs post-ASD diagnosis.
- Further research with larger sample sizes and expanded interventions is warranted.
- Nurses play a crucial role in supporting parents after an ASD diagnosis.
Abstract:
Parents of children who receive the diagnosis of autistic spectrum disorder (ASD) experience a situational crisis related to receiving the diagnosis, which causes feelings of distress and urgency to access services for the affected child. This paper describes a randomized trial (n = 31) that was conducted at a regional diagnostic center of a large metropolitan children's hospital to (a) refine a nursing intervention designed for parents of children with ASD and (b) to identify methodological revisions for a larger study. A secondary purpose was to test the effects of a post-diagnosis nursing intervention on parents' reports of stress, impact of event (diagnosis), and use of services after a child is newly diagnosed with ASD. The intervention consisted of usual care plus 3 hours contact with a pediatric nurse practitioner (PNP) for counseling, instruction, and assistance with implementation of the recommended treatment plan. The control group received only the usual care post-diagnosis, which consisted of a 1-hour consultation session to receive the results of diagnostic tests and a written copy of the recommended treatment plan provided by a developmental pediatrician and/or PNP. Between group differences in measures of "impact of event" and "perceived stress" were not statistically significant. This was attributed to a small sample size. A larger study is feasible and recommended with an expanded nursing intervention and a significantly larger sample recruited from an additional recruitment site. Nurses working with this special population must recognize that parents have information and counseling needs that begin after they receive the diagnosis of ASD for their child and can address these needs with a standardized nursing intervention.
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