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Assessing patient empowerment in caregivers of patients with autism spectrum disorder

Knapo, Julia (2022) Assessing patient empowerment in caregivers of patients with autism spectrum disorder. Master's Thesis, University of Pittsburgh. (Unpublished)

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Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder commonly referred to many genetics’ clinics. When considering genetic counselors’ role in the diagnostic pathway of this specific patient population, it is important to consider the point at which a genetic counselor is involved and the outcomes of genetic counseling. The Genetic Counseling Outcome Scale (GCOS-24) is a survey designed to measure empowerment in patients who receive genetic counseling services. The aim of this study is to (1) measure a baseline empowerment level of the caregivers of patients with ASD seen at UPMC Children’s Hospital of Pittsburgh Division of Genetic and Genomic Medicine, (2) identify factors that may impact the selected empowerment domains including caregiver strain and appointment timing, and (3) assess the satisfaction of caregivers regarding the timing of their genetic counseling appointment in relation to the patient’s diagnosis of ASD
Methods: A survey designed to collect information regarding satisfaction with appointment time and caregiver strain, and all questions from the empowerment domains of Hope, Emotional Regulation, and Behavioral Control were distributed to 46 caregivers of patients with an ASD diagnosis who were scheduled to see a genetic counselor and physician or nurse practitioner in the Division of Genetic and Genomic Medicine at UPMC Children’s Hospital of Pittsburgh.
Results: 15 individuals responded to the survey with 13 completing the GCOS-24 portion of the questions. Empowerment scores ranged from 51 to 91 with an average of 66.62 (SD 11.72). Caregiver strain ranged from 0 to 7 with an average of 2.86 and when compared to empowerment scores, there was a negligible correlation between the two (r = -0.0900). When analyzing satisfaction with appointment timing, there was no statistical difference in empowerment scores between individuals who were "happy/okay” and “neutral” regarding the amount of time they waited for an appointment (p = 0.5210). Zero individuals stated they were unhappy with their appointment timing.
Conclusion: Neither caregiver strain nor satisfaction with appointment timing showed significant correlation with empowerment scores. It is possible that the range in empowerment scores is due to factors outside of what was measured in this study.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Knapo, Juliajmk318@pitt.edujmk318
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairVento, Jodie Mventojm@pitt.eduventojm
Committee MemberWoerner, Audrey
Committee MemberCarlson, Jenna Cjnc53@pitt.edujnc53
Committee MemberSkinner, Charlotte
Date: 1 July 2022
Date Type: Publication
Defense Date: 17 June 2022
Approval Date: 1 July 2022
Submission Date: 22 June 2022
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 78
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: autism spectrum disorder, GCOS-24, genetic counselor outcome scale, empowerment, appointment time
Date Deposited: 01 Jul 2022 18:54
Last Modified: 01 Jul 2022 18:54


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