Abstract：
OBJECTIVE:Leading health agencies recommend physicians to provide information regarding genetic testing for autism spectrum disorders (ASD) to parents of affected children. How to effectively provide this information, however, is unclear for physicians. This qualitative study examined the information needs regarding ASD genetic testing among parents of affected children. METHODS:Semi-structured, in-depth interviews were conducted with 42 parents who had at least one child with ASD. Content analysis was utilized to analyze the interview data. RESULTS:The majority of parents (83%) reported they had never received information regarding ASD genetic testing from their doctors. Nevertheless, most parents (86%) expressed an interest to learn about this information. Their preferred topics included: cost (60%), benefits (48%), accuracy (38%), test procedure (29%), potential physical harms from the test (29%), confidentiality (12%), previous utilization by other affected families (2%), and eligibility criteria for this genetic testing (2%). Moreover, parents mentioned various methods to facilitate their learning, including Web-based approaches (43%), workshops/seminars (36%), brochures and flyers (31%), and videos (10%). CONCLUSION:To promote parental informed decision-making regarding ASD genetic testing, educational materials should be developed based on our findings. PRACTICE IMPLICATIONS:Application of these needs assessment findings will subsequently improve the delivery of healthcare services.
journal_name
Patient Educ Counsjournal_title
Patient education and counselingauthors
Li M,Amuta A,Xu L,Dhar SU,Talwar D,Jung E,Chen LSdoi
10.1016/j.pec.2015.12.023subject
Has Abstractpub_date
2016-06-01 00:00:00pages
1011-6issue
6eissn
0738-3991issn
1873-5134pii
S0738-3991(15)30159-2journal_volume
99pub_type
杂志文章abstract：OBJECTIVE:This article explores the effect of conflicting information, defined as contradictory information about medication topics from different sources, on medication adherence in a sample of chronically ill patients. We specifically investigate whether conflicting information and physician support directly affect m...
journal_title：Patient education and counseling
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abstract：OBJECTIVE:Social support networks have been identified as one factor that can help people resolve their problem drinking. A relatively new phenomenon is online support groups, such as the one provided on the Alcohol Help Center (AHC; http://www.alcoholhelpcenter.net). Preliminary use of the AHC support group will be su...
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doi：10.1016/j.pec.2018.04.009
更新日期：2018-09-01 00:00:00
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journal_title：Patient education and counseling
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更新日期：1993-06-01 00:00:00
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journal_title：Patient education and counseling
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更新日期：2015-08-01 00:00:00
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journal_title：Patient education and counseling
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更新日期：2006-02-01 00:00:00
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更新日期：1993-11-01 00:00:00
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更新日期：2006-09-01 00:00:00
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journal_title：Patient education and counseling
pub_type： 杂志文章,多中心研究,随机对照试验
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更新日期：2006-10-01 00:00:00
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更新日期：2018-07-01 00:00:00
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更新日期：2017-12-01 00:00:00
abstract：OBJECTIVE:Primary care providers (PCPs) are encouraged to counsel their obese patients about weight loss. We used focus groups to explore how PCPs communicate with patients about weight management. METHODS:During the summer of 2010, we conducted five focus groups of community-based PCPs who had patients enrolled in a ...
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更新日期：2012-10-01 00:00:00
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更新日期：2011-05-01 00:00:00
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更新日期：2008-07-01 00:00:00
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journal_title：Patient education and counseling
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更新日期：2020-01-01 00:00:00
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更新日期：1996-10-01 00:00:00
abstract：OBJECTIVE:Explore the impact of existential vulnerability for nursing home doctors' experiences with dying patients and their families. METHODS:We conducted a qualitative study based on three focus group interviews with purposive samples of 17 nursing home doctors. The interviews were audio-recorded, transcribed, and ...
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更新日期：2016-12-01 00:00:00
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journal_title：Patient education and counseling
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更新日期：2005-04-01 00:00:00
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更新日期：2020-11-09 00:00:00
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更新日期：2010-02-01 00:00:00
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