Privacy, Disability, and Family: Exploring the Privacy Management Behaviors of Parents with a Child with Autism

Hays, Alexie; Butauski, Maria

doi:10.1080/10570314.2017.1398834

Cited by 13 publications

(12 citation statements)

References 30 publications

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“…Professionals have an important role in providing information to families during the diagnosis of childhood ASD and in following the disorder to assist them in making decisions (12) . In agreement with other studies, the formal sources of support were pediatric neurologists (3) , teachers, therapists (13) , social worker (14) , among others.…”

Section: Discussionsupporting

confidence: 88%

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Informational support for families of children with autism spectrum disorder

Weissheimer

Mazza

Freitas

et al. 2021

Rev. Gaúcha Enferm.

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Objective: To identify the sources of informational support used by families of children with Autism Spectrum Disorder. Method: Qualitative and descriptive research carried out in three health institutions and three teaching institutions in Paraná, Ceará and Amapá. 55 family members participated who responded to semi-structured interviews, between September 2018 and 2019. Thematic categorical analysis and the resources of Qualitative Data Analysis Software were used. Results: Families find informational support from several sources, both formal and informal, such as the internet and other sources (books, Workshops, courses, television). Conclusion: Families use different sources of information, however, often incomplete and contradictory, which can generate a new demand on health professionals, in order to integrate access to information in the health care process, since they must be considering benefits and weaknesses that this represents for society.

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Section: Discussionsupporting

confidence: 88%

“…I participate in the group [name], the girls post all the information there, so, in fact, what helps me the most is the group, all the information about autism, video and lecture (13). (19).…”

Section: Met Mothers Of Other Children Over the Internet It' S A Blog Like A Website (9)mentioning

confidence: 99%

Informational support for families of children with autism spectrum disorder

Weissheimer

Mazza

Freitas

et al. 2021

Rev. Gaúcha Enferm.

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“…When parents learn an unforeseen medical diagnosis about their child, there is a period of "anticipated turbulence" [63] as parents process information, experience uncertainty, and are emotionally challenged. This experience triggers privacy management as the parents make numerous decisions communicating information to the child, family members, and health professionals.…”

Section: Privacy Turbulencementioning

confidence: 99%

Conceptualization and operationalization: utility of communication privacy management theory

Petronio

Child

2020

Current Opinion in Psychology

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Communication Privacy Management (CPM) theory explains one of the most important, yet challenging social processes in everyday life, that is, managing disclosing and protecting private information. The CPM privacy management system offers researchers, students, and the public a comprehensive approach to the complex and fluid character of privacy management in action.Following an overview of Communication Privacy Management framework, this review focuses on recent research utilizing CPM concepts that cross a growing number of contexts and illustrates the way people navigate privacy in action. Researchers operationalize the use of privacy rules and other core concepts that help describe and explain the ups and downs of privacy management people encounter.

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“…However, these families emphasize that providing support and community is their real motivation. Making aspects of their lives public for the benefit of others is in stark contrast to offline studies where parents would only disclose their child's autism diagnosis if by doing so their child would benefit (Hays & Butauski, 2018). Indeed, some studies show that parents of chil-dren with disability report less social stigma in online communities (Ammari, Morris, & Schoenebeck, 2014).…”

Section: Scenes From "Sharenting" On Social Mediamentioning

confidence: 99%

Privacy and Digital Data of Children with Disabilities: Scenes from Social Media Sharenting

Goggin

Ellis

2020

MaC

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Children with disabilities have been an overlooked group in the debates on privacy and data management, and the emergence of discourses on responsibilization. In this article, we offer a preliminary overview, conceptualization, and reflection on children with disabilities, their experiences and perspectives in relation to privacy and data when it comes to existing and emergent digital technology. To give a sense of the issues at play, we provide a brief case study of “sharenting” on social media platform (that is, sharing by parents of images and information about their children with disabilities). We conclude with suggestions for the research and policy agenda in this important yet neglected area.

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Privacy, Disability, and Family: Exploring the Privacy Management Behaviors of Parents with a Child with Autism

Cited by 13 publications

References 30 publications

Informational support for families of children with autism spectrum disorder

Informational support for families of children with autism spectrum disorder

Conceptualization and operationalization: utility of communication privacy management theory

Privacy and Digital Data of Children with Disabilities: Scenes from Social Media Sharenting

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