Literature DB >> 29904325

Protection of Privacy of Information Rights among Young Adults with Developmental Disabilities.

Nazilla Khanlou1, Anne Mantini1, Attia Khan1, Katie Degendorfer2, Masood Zangeneh3.   

Abstract

Protection of privacy of information for young adults with developmental disabilities and their families is essential to promote quality of life, well-being, empowerment, and inclusion. Despite this, the young adults' information privacy rights are increasingly at risk. This paper provides a scoping review, applying Arksey and O'Malley's (2005) approach, of all published peer-reviewed journal articles and gray literature to examine the barriers and facilitators in utilization of legislation that protects the collection, use, disclosure, and access of personal information in Canada. The scoping review process was further expanded with a rigorous reliability method and applied a socio-ecological framework to the final 47 studies. National and international policy and legislation (macro level), organization-based factors (meso), young adults and community interactions (exo), and individual disability related factors (micro) are examined. The review identifies the barriers and highlights the importance of facilitators for acting on personal privacy rights.

Entities:  

Keywords:  Canada; Confidentiality; Information privacy rights; PHIPA; PIPEDA; Personal information protection

Year:  2018        PMID: 29904325      PMCID: PMC5986852          DOI: 10.1007/s11469-018-9904-x

Source DB:  PubMed          Journal:  Int J Ment Health Addict        ISSN: 1557-1874            Impact factor:   3.836


  15 in total

Review 1.  The right of caregivers to access health information of relatives with mental illness.

Authors:  Billy Wing Yum Chan; Ann-Marie O'Brien
Journal:  Int J Law Psychiatry       Date:  2011-11-12

2.  An international comparison of legal frameworks for supported and substitute decision-making in mental health services.

Authors:  Gavin Davidson; Lisa Brophy; Jim Campbell; Susan J Farrell; Piers Gooding; Ann-Marie O'Brien
Journal:  Int J Law Psychiatry       Date:  2015-08-28

3.  Mothering children with developmental disabilities: A critical perspective on health promotion.

Authors:  Nazilla Khanlou; Nida Mustafa; Luz Maria Vazquez; Deborah Davidson; Karen Yoshida
Journal:  Health Care Women Int       Date:  2017-02-22

4.  Scoping reviews: time for clarity in definition, methods, and reporting.

Authors:  Heather L Colquhoun; Danielle Levac; Kelly K O'Brien; Sharon Straus; Andrea C Tricco; Laure Perrier; Monika Kastner; David Moher
Journal:  J Clin Epidemiol       Date:  2014-07-14       Impact factor: 6.437

5.  Personal health records: Consumer attitudes toward privacy and security of their personal health information.

Authors:  Deborah Beranek Lafky; Thomas A Horan
Journal:  Health Informatics J       Date:  2011-03       Impact factor: 2.681

6.  Adoption of Electronic Personal Health Records in Canada: Perceptions of Stakeholders.

Authors:  Marie-Pierre Gagnon; Julie Payne-Gagnon; Erik Breton; Jean-Paul Fortin; Lara Khoury; Lisa Dolovich; David Price; David Wiljer; Gillian Bartlett; Norman Archer
Journal:  Int J Health Policy Manag       Date:  2016-07-01

7.  Crime and victimisation in people with intellectual disability: a case linkage study.

Authors:  Billy C Fogden; Stuart D M Thomas; Michael Daffern; James R P Ogloff
Journal:  BMC Psychiatry       Date:  2016-05-28       Impact factor: 3.630

8.  Evolving data access policy: The Canadian context.

Authors:  Stephanie O M Dyke; Katie M Saulnier; Tomi Pastinen; Guillaume Bourque; Yann Joly
Journal:  Facets (Ott)       Date:  2016-09-15

9.  Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada.

Authors:  Nazilla Khanlou; Nasim Haque; Nida Mustafa; Luz Maria Vazquez; Anne Mantini; Jonathan Weiss
Journal:  Int J Ment Health Addict       Date:  2017-01-17       Impact factor: 3.836

10.  Is Canada ready for patient accessible electronic health records? A national scan.

Authors:  Sara Urowitz; David Wiljer; Emma Apatu; Gunther Eysenbach; Claudette Delenardo; Tamara Harth; Howard Pai; Kevin J Leonard
Journal:  BMC Med Inform Decis Mak       Date:  2008-07-24       Impact factor: 2.796

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