Opinions and Beliefs of Adults with Intellectual Disabilities or Visual Impairment about Research with Routine Care Data
References
- Albaum, Carly, Victoria Chan, Teresa Sellitto, Nisha Vashi, Richard P. Hastings, and Jonathan Weiss. 2021.
“Redressing the Balance: A Systematic Review of Positive Psychology in the Intellectual Disability Literature.” In International Review of Research in Developmental Disabilities, edited by Robert M. Hodapp & Deborah. J. Fidler, volume 60, 1–53. Academic Press. DOI: 10.1016/bs.irrdd.2021.08.003 - Anagnostopoulos, Ioannis, Sherali Zeadally, and Ernesto Exposito. 2016. “Handling Big Data: Research Challenges and Future Directions.” The Journal of Supercomputing 72(4): 1494–1516. DOI: 10.1007/s11227-016-1677-z
- Andrews, Sara M, Melissa Raspa, Anne Edwards, Rebecca Moultrie, Lauren Turner-Brown, Laura Wagner, Alexandra Alvarez Rivas, Mary Katherine Frisch, and Anne C. Wheeler. 2020. Just Tell Me What’s Going On”: The Views of Parents of Children with Genetic Conditions Regarding the Research Use of Their Child’s Electronic Health Record.” Journal of the American Medical Informatics Association 27(3): 429–436. DOI: 10.1093/jamia/ocz208
- Bakkum, Lianne, Esther H. Bisschops, Shannon Lagerweij, and Carlo Schuengel. (2023). “Impact of the Care and Coercion Act on Recorded Involuntary Care in Intellectual Disability Care: a Time-Series Analysis.” Journal of Intellectual Disability Research 67(12): 1216–1226. DOI: 10.1111/jir.12991
- Bates, Peter, and Fabian A. Davis. 2004. “Social Capital, Social Inclusion and Services for People with Learning Disabilities.” Disability & Society 19(3): 195–207. DOI: 10.1080/0968759042000204202
- Cullen, Mairi Ann, and Geoff Lindsay. 2019. “Special Educational Needs: Understanding Drivers of Complaints and Disagreements in the English System.” Frontiers in Education 77:1–8. DOI: 10.3389/feduc.2019.00077
- De la Croix, Anne, Aileen Barrett, and Terese Stenfors. 2018. “How to… Do Research Interviews in Different Ways.” The Clinical Teacher 15(6): 451–456. DOI: 10.1111/tct.12953
- Dodge, Kenneth A., Joseph M. Price, Jo-Anne Bachorowski, and Joseph P. Newman. 1990. “Hostile Attributional Biases in Severely Aggressive Adolescents.” Journal of Abnormal Psychology 99(4): 385–392. DOI: 10.1037/0021-843X.99.4.385
- GDPR. “General Data Protection Regulation.” 2023. Accessed April 3.
https://gdpr.eu/what-is-gdpr/ . - Glover, Gyles, Rachael Williams, George Tompkins, and Jessie Oyinlola. 2019. “An Observational Study of the Use of Acute Hospital Care by People with Intellectual Disabilities in England.” Journal of Intellectual Disability Research 63(2): 85–99. DOI: 10.1111/jir.12544
- Hayes, Alan, Matthew Gray, and Ben Edwards. 2008.
“Social Inclusion: Origins, Concepts and Key Themes.” Canberra: Social Inclusion Unit, Department of the Prime Minister and Cabinet. - Heppe, Eline C. M., Agnes M. Willemen, Sabina Kef, and Carlo Schuengel. 2020. “Improving Social Participation of Adolescents with a Visual Impairment with Community-Based Mentoring: Results from a Randomized Controlled Trial.” Disability and Rehabilitation 42(22): 3215–3226. DOI: 10.1080/09638288.2019.1589587
- Horridge, Karen. A, Kenneth Mcgarry, Jane Williams, Gabriel Whitlingum, and British Academy of Childhood Disability. 2016. “Prospective Pilots of Routine Data Capture by Paediatricians in Clinics and Validation of the Disabilities Complexity Scale.” Developmental Medicine & Child Neurology 58(6): 581–588. DOI: 10.1111/dmcn.13101
- Huesmann, L. Rowell. 1998.
“The Role of Social Information Processing and Cognitive Schema in the Acquisition and Maintenance of Habitual Aggressive Behavior.” In Human Aggression, edited by Russell G. Geen and Edward Donnerstein, 73–109. Academic Press. DOI: 10.1016/B978-012278805-5/50005-5 - IAPP, International Association of Privacy Professionals. 2022. “A guide to the EU’s unclear Anonymization Standards.” Accessed December 8.
https://iapp.org/news/a/a-guide-to-the-eus-unclear-anonymization-standards/ . - ICO, Information Commissioner’s Office. 2022. “UK-GDPR.” Accessed April 3, 2023.
https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/ . - Jones, Chelsea Temple. 2021. “Wounds of Regret: Critical Reflections on Competence, Professional Intuition, and Informed Consent in Research with Intellectually Disabled People.” Disability Studies Quarterly 41(2). DOI: 10.18061/dsq.v41i2.6869
- Khanlou, Nazilla, Attia Khan, Luz Maria Vazquez, and Masood Zangeneh. 2021. “Digital Literacy, Access to Technology and Inclusion for Young Adults with Developmental Disabilities.” Journal of Developmental and Physical Disabilities 33(1): 1–25. DOI: 10.1007/s10882-020-09738-w
- Liaw, Siaw.-Teng, Jane Taggart, Hairong Yu, and Simon de Lusignan. 2013. “Data Extraction From Electronic Health Records: Existing Tools May Be Unreliable and Potentially Unsafe.” Australian Family Physician 42(11): 820–823.
- McDonald, Katherine. E, and Colleen A. Kidney. 2012. “What Is Right? Ethics in Intellectual Disabilities Research.” Journal of Policy and Practice in Intellectual Disabilities 9(1): 27–39. DOI: 10.1111/j.1741-1130.2011.00319.x
- Miller, Natalie V, and Charlotte Johnston. 2019. “Social Threat Attentional Bias in Childhood: Relations to Aggression and Hostile Intent Attributions.” Aggressive Behavior 45(3): 245–254. DOI: 10.1002/ab.21813
- Moody, Gwenllian, and Fiona V. Lugg-Widger. 2017. “Public Understanding of, and Attitudes Towards, Data Linkage in Research.” International Journal of Population Data Science 1(1). DOI: 10.23889/ijpds.v1i1.92
- Reppermund, Simone, Theresa Heintze, Preeyaporn Srasuebkul, Rebecca Reeve, Kimberlie Dean, Melinda Smith, Eric Emerson,… et al. 2019. “Health and Wellbeing of People with Intellectual Disability in New South Wales, Australia: A Data Linkage Cohort.” BMJ Open 9(9):
e031624 . DOI: 10.1136/bmjopen-2019-031624 - Ritchie, Jane, and Liz Spencer. 1994.
“Qualitative Data Analysis for Applied Policy Research,” In Analyzing Qualitative Data, edited by Alan Bryman and Robert G. Burgess, 173–194. London: Routledge. DOI: 10.4324/9780203413081_chapter_9 - RIVM, Rijksinstituut voor Volksgezondheid en Milieu [National Institute of Public Health, and the Environment]. 2023. “WGBO, Wet Geneeskundige BehandelingsOvereenkomst.” Accessed December 8, 2023.
https://www.rivm.nl/cpt/kwaliteit-wet-en-regelgeving/wetgeving/wgbo . - Ryan, Richard M., and Edward L. Deci. 2000. “The Darker and Brighter Sides of Human Existence: Basic Psychological Needs as a Unifying Concept.” Psychological Inquiry 11(4): 319–338. DOI: 10.1207/s15327965pli1104_03
- Schuengel, Carlo, Joep Tummers, Petri J. C. M. Embregts, and Geraline L. Leusink. 2020. “Impact of the Initial Response to Covid-19 on Long-Term Care for People with Intellectual Disability: An Interrupted Time Series Analysis of Incident Reports.” Journal of Intellectual Disability Research 64(11): 817–824. DOI: 10.1111/jir.12778
- Schuengel, Carlo, Maarten Cuypers, Lianne Bakkum, and Geraline L. Leusink. 2023. “Reproductive Health of Women With Intellectual Disability: Antenatal Care, Pregnancies and Outcomes in the Dutch Population.” Journal of Intellectual Disability Research 67(12): 1306–1316. DOI: 10.1111/jir.12982
- Simpson, Jane, and Carol Thomas. 2015. “Clinical psychology and disability studies: Bridging the disciplinary divide on mental health and disability.” Disability and rehabilitation 37(14): 1299–1304. DOI: 10.3109/09638288.2014.961656
- United Nations. 2006. “Convention on the rights of persons with disabilities.” Accessed December 8, 2023.
https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities#:~:text=The%20purpose%20of%20the%20present,respect%20for%20their%20inherent%20dignity . - Woittiez, Isolde, Lisa Putman, Evelien Eggink, and Michiel Ras. 2014. “Zorg beter Begrepen: Verklaringen voor de Groeiende Vraag naar Zorg voor Mensen met een Verstandelijke Beperking. Sociaal Cultureel Planbureau.” Accessed December 8, 2023. DOI: 10.48592/580
- Wolpert, Miranda, and Harry Rutter. 2018. “Using Flawed, Uncertain, Proximate and Sparse (Fups)Data in the Context of Complexity: Learning From the Case of Child Mental Health.” BMC Medicine 16(1):82. DOI: 10.1186/s12916-018-1079-6
DOI: https://doi.org/10.16993/sjdr.1045 | Journal eISSN: 1745-3011
Language: English
Page range: 67 - 81
Submitted on: Jun 11, 2023
Accepted on: Jan 17, 2024
Published on: Mar 12, 2024
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
© 2024 Maaike M. van Rest, Eline C. M. Heppe, Richtje Ras, Mairi Ann Cullen, Anne de la Croix, Carlo Schuengel, Richard P. Hastings, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.