title: Intervention pilot for parents of children with autistic spectrum disorder.
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.
authors.affiliation: University of Pennsylvania, School of Nursing, Philadelphia, PA, USA.
authors.forename: Ellen
authors.initials: E
authors.lastname: Giarelli
authors.forename: Margaret
authors.initials: M
authors.lastname: Souders
authors.forename: Jennifer
authors.initials: J
authors.lastname: Pinto-Martin
authors.forename: Joan
authors.initials: J
authors.lastname: Bloch
authors.forename: Susan E
authors.initials: SE
authors.lastname: Levy
mesh_terms: D000328:Adult; D001294:Attitude to Health; D001321:Autistic Disorder / Q000175:diagnosis* / Q000517:prevention & control*; D002648:Child; D003376:Counseling / Q000458:organization & administration; D005260:Female; D006266:Health Education / Q000458:organization & administration*; D006776:Hospitals, Pediatric; D006792:House Calls; D006801:Humans; D008016:Life Change Events; D008297:Male; D009722:Nurse Practitioners / Q000458:organization & administration* / Q000523:psychology; D024802:Nurse's Role / Q000523:psychology; D015403:Nursing Evaluation Research; D010290:Parents / Q000193:education* / Q000523:psychology; D010347:Patient Care Planning / Q000458:organization & administration; D010371:Pediatric Nursing / Q000458:organization & administration*; D015143:Philadelphia; D010865:Pilot Projects; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology / Q000517:prevention & control / Q000523:psychology