- Email: [email protected]
or developmental disabilities
Disability and Health Journal xxx (xxxx) xxx
Contents lists available at ScienceDirect
Disability and Health Journal journal homepage: www.disabilityandhealthjnl.com
Brief Report
Technology and social media use by adult patients with intellectual and/or developmental disabilities Patricia A. Patrick a, b, c, *, Izel Obermeyer a, b, Jason Xenakis a, b, Doug Crocitto a, David M. O'Hara a, b a b c
Westchester Institute for Human Development, Valhalla, NY, USA School of Health Sciences & Practices, New York Medical College, Valhalla, NY, USA Department of Pediatrics, New York Medical College, Valhalla, NY, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 6 December 2018 Received in revised form 19 August 2019 Accepted 28 August 2019
Background: Technology and social media offer individuals with intellectual and/or developmental disabilities (I/DD) unique and innovative ways to facilitate active participation in their own healthcare process. What remains unclear is the extent to which devices are currently used by this growing patient population. Objective: To explore the prevalence of technology and social media use, as well as the possible barriers, among adult patients with I/DD. Methods: A cross-sectional study utilizing an anonymous, accessible survey was used to obtain data from all adult patients (18 þ years of age) with I/DD presenting for primary care services at a healthcare facility in New York between September and December of 2016. Results: A total of 370 individuals completed the survey (529 approached, 69.9% response rate). Less than half (44.6%) of respondents used devices such as a tablet, smartphone or desktop; most (86.8%) did not use social media. Only 21.6% of respondents indicated that they use some type of assistive technology. While some respondents (46.0%) were identified by their caregivers as having a disability that would prevent them from learning/using technology, other respondents reported having no challenges (18.0%), needing training and/or ongoing support (7.4%), or being uncertain as to whether they would experience any challenges (15.5%). Conclusions: Many adult patients with I/DD do not use technology and social media that could promote self-determination and participation in their healthcare. Continued efforts must be made to promote technology use among adults with I/DD and to ensure that appropriate training is available for both the individual and his/her caregivers to achieve adoption and utilization. © 2019 Elsevier Inc. All rights reserved.
Keywords: Intellectual disability Developmental disability Assistive technology Social media Patient education Self-determination
Introduction Despite the millions of individuals living with intellectual and/ or developmental disabilities (I/DD) in the United States,1,2 their integration into their communities remains limited.3 More specifically, adults with I/DD are less likely to hold full-time employment or to obtain a post-secondary degree or diploma; they also face poverty or issues that are related to social inclusion.3 Technologydassistive devices, computers, tablets, smartphones and social mediadoffer individuals with I/DD unique and innovative
* Corresponding author. Westchester Institute for Human Development, Cedarwood Hall, Valhalla, NY, 10595, USA. E-mail address: [email protected] (P.A. Patrick).
ways to facilitate their participation in society as consumers, employees, and even as voters.4e6 Such technology also offers the potential for individuals with I/DD to direct their own health care and health care resources as well as achieve greater health literacy, which in turn improves health outcomes.7,8 For example, accessible survey technology gives patients with I/DD the ability to participate in surveys regarding preferences about care and treatment options. What remains unclear, however, is the extent to which technological devices are currently used by the growing patient population of adults with I/DD. A limited number of recent studies have explored the prevalence of technology and social media use among individuals with I/ DD and associated barriers.9e15 Moreover, while social media has been commonly understood as online networking and content sharing via websites and applications,16 the broader literature
https://doi.org/10.1016/j.dhjo.2019.100840 1936-6574/© 2019 Elsevier Inc. All rights reserved.
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
2
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
contains inconsistent terminology and a lack of stable definitions to describe technological devices and advances aimed to assist in the daily activities and inclusion of individuals with I/DD. In the last 10 years, terms have included adaptive technology, assistive technology, instructional technology, web technology, communication technology, mobile technology, virtual technology, and voice recognition technology. Assistive technology, while having no consistent definition, was the most used term throughout the last 10 years to describe technological trends and innovations to support people with I/DD.1 Regardless of descriptive title, a third of such technological devices purchased are not successfully adopted by individuals with I/ DD.17 Barriers to this processdthose beyond the cost of the technology, the most commonly cited challenge18dinclude lack of knowledge and lack of support, both of which impede successful implementation of the device into daily life.16 In addition, individuals with disabilities are less likely to obtain health information from the internet or exchange health information with a provider via the internet due to lack of trust.19 Technology and social media can assist individuals with I/DD in achieving independence and promoting self-determination across many facets of life, especially with respect to healthcare decisionmaking. Therefore, investigators sought to explore the prevalence of use of technology and social media among adult patients with I/ DD. We also sought to learn what additional barriers might exist to the use of technology and social media in the areas of health education and promotion.
collection began, eligible participants were approached by a research assistant and invited to participate in this study while waiting for their visit. Data collection The project survey was created using software that allows survey creators to include images and audio with each question and each response to enhance independent completion by patients with disabilities. A research assistant made a touch-screen device available to participants for the administration of the survey. The 22-question survey took about 10 minutes to complete. If an individual was called to their visit during survey administration, he/she was asked to complete the survey prior to leaving. Participants were able to refuse to complete the survey at any time. Data collection took place over a 4-month period. The survey, which was designed by the investigators, first collects basic, self-reported demographic and clinical informationdage range, gender, race/ethnicity, and primary challenge. That section is followed by questions regarding use of and comfort with technology and social media (see Appendix). Accessible design standards were considered when designing the survey, which was kept at an 8th grade reading level. More specifically, simple vocabulary was used to allow greater and broader comprehension. The answer choices were kept clear and kept to a restricted amount of choices. Investigators limited the number of open-ended questions. Data analysis
Methods Study design A cross-sectional study utilizing an anonymous, accessible survey was used to obtain data from individuals with I/DD. Participants and setting All adult (18 yearsþ) patients presenting for primary care at a healthcare facility in New York between September and December of 2016, regardless of primary diagnosis, were eligible to participate. The facility offers both primary and specialty care to individuals with disabilities, with over 40,000 visits per year by over 5,500 patients. According to reports generated from the site's electronic health record (EHR) using ICD-10 codes; patients have primary diagnoses as follows:
For the overall sample, frequency of categorical responses were calculated and reported; missing data were reported as “no response.” Open-ended responses to such questions as, “What problems might you have in using technology or social media?” were isolated and pulled from the dataset to create response lists. These lists were reviewed independently by two co-investigators to identify themes. For example, if subjects had no problems with using technology, responses given may include “no problems,” “none,” “would have no difficulties” and would give rise to such a noted category as “none.” Investigators compared their identified categories and derived a final list. Once themes were finalized, frequency of responses to these questions were calculated and reported. Responses were also compared based on age strata; such analyses utilized the chi-square test for categorical variables (e.g., yes/no). Results were considered statistically significant at p < 0.05. All analyses were conducted utilizing SPSS v. 22.0. Sample size
Intellectual/Developmental Disabilities Neurotic/Personality Disorders Autistic Spectrum Disorders Mood Disorders Mental Disorders due to Brian Injuries/Other Conditions Schizophrenic Disorders Dementias
52.3% 23.1% 10.1% 6.4% 3.6% 3.5% 1.0%
In addition, 56.2% of the patient population is dually eligible for Medicare and Medicaid, 35.4% are covered by Medicaid, 7.9% carry private insurance and 0.5% are uninsured.
Adult primary care within the facility has 100 adult patients presenting each day, or 500 each week. Assuming 75 patients were to be approached each week (given staff availability) and a response rate of 30%, investigators expected at least 23 responses per week, or 368 responses over the 16-week data collection period. The sample size is sufficient to achieve a 5% margin of error (confidence level ¼ 95%). This study was approved by the Institutional Review Board of New York Medical College, which also granted both a waiver of consent and a waiver of the Health Insurance Portability and Accountability Act (HIPAA) authorization.
Recruitment procedures Results In the month preceding data collection, announcements regarding the study were displayed and made available in waiting areas of the facility. This allowed both individuals and caregivers to become aware of the study prior to being approached. Once data
A total of 370 individuals completed the survey (529 approached, 69.9% response rate). A third of respondents (32.2%) were able to complete the survey independently while the other
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
respondents did so with the help of a parent or caregiver. Age distribution of respondents was as follows: 18e29 years, 22.2%; 30e39 years, 18.9%; 40e49 years, 18.7%; 50e59 years, 23.2%; 60e69 years, 13.2%; and, 70 þ years, 3.8%; 61.1% were male. Half (49.7%) of respondents were white, 31.1% African American, and, 13.2% Hispanic. Most respondents (92.7%) were primary English speakers and lived in a group home 89.5%. Self-reported primary challenge is shown in Table 1. Less than half (44.6%) of respondents indicated they used some type of device from the choices of tablet, smartphone, desktop, laptop or other. Fig. 1 shows device use by age category (p < 0.05). Among those not using any device (n ¼ 205), 30.7% indicated interest in technology as follows: computer/laptop, 42.9%; tablet, 36.5%; and, smartphone, 20.6%. Comments made in response to “If you could have any technology, what would it be?” included: “a tablet for entertainment; to learn things, look things up; ” “I want to try a computer”; “would like a laptop for communication”; “wants his own tablet with learning program”; “tablet with application that allows for better communication”; “phone that has larger type for patients with visual deficits”; and, “laptop with bigger keys,” Table 1 Responses to the survey question, “From the list below, which can be most difficult for you?” N ¼ 370. SURVEY TEXT
N
(%)
Speaking
SURVEY IMAGE
74
(20.0)
Thinking
66
(17.8)
Learning
56
(15.1)
Moving
47
(12.7)
Hearing
29
(7.8)
Seeing
25
(6.8)
Remembering
20
(5.4)
No response
53
(14.4)
3
Just over 21% of respondents indicated that they use some type of assistive technology (e.g., screen readers, alternative input devices). Among those 80 respondents, they specified the primary help provided as follows: in communicating, 70.9%; in doing things faster, 62.5%; in doing things they could not normally do, 62.5%; and, in learning new things, 31.3%. Those using any technology used it mostly at their residence (95.0%), liked using it (97.5%) and were comfortable using it (95.0%). Many respondents (70.3%) have Internet access at their place of residence. Most survey respondents (86.8%) indicated they did not use social media. For the few who did use social media (n ¼ 49), Facebook and Instagram were the most popular choices. Social media use was associated with age: 59.2%, 18e29 years; 28.6%, 30e39 years; 8.2%, 40e49 years; 4.1%, 50e59 years (p < 0.05). None of the subjects in the 60 þ age strata (n ¼ 63) reported using social media. Identified barriers to use of technology and/or social media are shown in Fig. 2. Discussion This study found that more than half of adult patients with I/DD do not use any type of current technological devicedonly 10% reported using a smartphone. Most adult patients also do not use social media. Use of both technology and social media was associated with age; patients under 60 years were more likely to use devices such as desktops, laptops, tablets and smartphones than those over 60 years of age. Nevertheless, technology and social media use was low compared to the general population, perhaps due to many respondents not having the economic resources to purchase such devices. While for some individuals the use of such technology may be difficult, others expressed interest and could either use it independently with training or could develop a comfort level in its use with some training and additional support from caregivers. These findings are consistent with those of similar studies, some conducted up to 20 years ago. Technology has been and continues to be underutilized by individuals with disabilities and barriers included lack of access, expense, training and support, and device maintenance.11e13,15,20,21 Limitations to this study include the use of a brief survey to collect data from patients prior to appointments with their primary care physicians. With time constraints and the desire to complete each survey, some responses could not be explored further to obtain greater explanation or clarification. In addition, for twothirds of our sample, caregivers who transport patients from their residence to the healthcare facility assisted in responding to questions. These caregivers, however, are usually familiar with the patients so responses were likely made by individuals aware of each participant's strengths and challenges. It is important to explore technological options and their role within health education and promotion given the significant health disparities experienced by individuals with I/DD. Adults with I/DD experience poorer health outcomes than people without I/DD as that they live with complex health conditions; have limited access to quality healthcare; have poorly managed chronic conditions, such as hypertension and diabetes; have high prevalence of obesity; miss preventative screenings, i.e. cancer, vision; and have mental health problems. Although they have higher rates of chronic diseases than the general population, adults with disabilities are significantly less likely to receive preventive care. For example, people with cognitive limitations are up to 5 times more likely to have diabetes than the general population while receiving less care for its management.22,23 Technology that supports health education and selfmanagement skills could help reduce such health disparities. Research on instructional methods for people with I/DD have
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
4
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
Fig. 1. Devices used by age category of survey respondents. N ¼ 370.
Fig. 2. Identified barriers to using technology and/or social media. N ¼ 370. * Caregivers indicated that patients would be limited in using technology given difficulty with such functioning as vision, learning, and fine motor skills.
shown that technology focused on promoting health and self-care should include hands-on, interactive components that allow for the development of the required skills as well as meeting daily needs. By enhancing personal development with an emphasis on active participation, feelings of choice, meaning, and purpose are also positively impacted.24 Conclusion Technology offers innovative ways in which individuals with disabilities can promote self-determination in the healthcare environment to improve their health outcomes and satisfaction.25e27 It can be used to record and communicate decision preferences to facilitate the shift from a disease-centered to a person-centered approach to care. Ultimately, by allowing individuals to engage in education and self-care, contribute to
decisions, and, in essence, live more independently, they can experience an improved health status and quality of life.21,28 The current study revealed that, despite its positive potential, technology use remains low among adults with I/DD, with even fewer using social media. In light of these results, continued efforts must be made to promote technology and social media use among this population and to ensure that appropriate training is available for both the individual and his/her caregivers to achieve adoption and utilization, especially in terms of health promotion. Acknowledgements The investigators would like to acknowledge AnneBeth Litt, MD, Medical Director, and Marilyn Klein, MA, CCC-SLP, Director, Speech and Hearing Center, Westchester Institute for Human Development, for their support in the administration of this study.
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
Appendix. Examples of questions and accompanying images used to make survey accessible to respondents
5
References 1. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil. 2011;32:419e436. 2. Zablotsky B, Black LI, Blumberg SJ. Estimated Prevalence of Children with Diagnosed Developmental Disabilities in the United States, 2014e2016, NCHS Data Brief No. 291 (DHHS Publication No. 2018e1209). Hyattsville, MD: National Center for Health Statistics; 2017. 3. Manzoor M, Vimarlund V. Digital technologies for social inclusion of individuals with disabilities. Health Technol. 2018;8(5):377e390. 4. Van Laarhoven T, Johnson JW, Van Laarhoven-Myers T, Grider KL, Grider KM. The effectiveness of using a video iPod as a prompting device in employment settings. J Behav Educ. 2009;18(2):119e141. 5. Leopold A, Lourie A, Petras H, Elias E. The use of assistive technology for cognition to support the performance of daily activities for individuals with cognitive disabilities due to traumatic brain injury: the current state of the research. NeuroRehabilitation. 2015;37(3):359e378. 6. Borgestig M, Sandqvist J, Ahlsten G, Falkmer T, Hemmingsson H. Gaze-based assistive technology in daily activities in children with severe physical impairments–an intervention study. Dev Neurorehabil. 2017;20(3):129e141. 7. O'Hara D, Seagriff-Curtin P, Levitz M, Davies D, Stock S. Using personal digital assistants to improve self-care in oral health. J Telemed Telecare. 2008;14:150e151. 8. O'Hara D, Stock SE, Davies DK. Trends in using technology to achieve better health outcomes. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, eds. Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Switzerland: Springer International Publishing; 2016. 9. Raspa M, Fitzgerald T, Furberg RD, et al. Mobile technology use and skills among individuals with fragile X syndrome: implications for healthcare decision making. J Intellect Disabil Res. 2018;62(10):821e832. 10. Wehmeyer ML. The use of assistive technology by people with mental retardation and barriers to this outcome: a pilot study. Technol Disabil. 1995;4:195e204. 11. Wehmeyer ML. National survey of the use of assistive technology by adults with mental retardation. Ment Retard. 1998;36:44e51. 12. Wehmeyer ML. Assistive technology and students with mental retardation: utilization and barriers. J Spec Educ Technol. 1999;14:48e58. 13. Carey AC, Friedman MG, Bryen DN. Use of electronic technologies by people with intellectual disabilities. Ment Retard. 2005;43(5):322e333. 14. Kaye HS, Yeager P, Reed M. Disparities in usage of assistive technology among people with disabilities. Assist Technol. 2008;20:194e203. 15. Tanis ES, Palmer S, Wehmeyer M, et al. Self-report computer-based survey of technology use by people with intellectual and developmental disabilities. Intellect Dev Disabil. 2012;50(1):53e68. 16. Coyle CL, Vaughn H. Social networking: communication revolution or evolution? Bell Labs Tech J. 2008;13(2):13e18. 17. Dawe M. Desperately seeking simplicity: how young adults with cognitive disabilities and their families adopt assistive technologies. In: Proceedings of the al; SIGCHI Conference on Human Factors in Computing Systems. Quebec: Montre 2006:1143e1152. CHI 2006. 18. Boot FH, Owuor J, Dinsmore J, MacLachlan M. Access to assistive technology for people with intellectual disabilities: a systematic review to identify barriers and facilitators. J Intellect Disabil Res. 2018;62(10):900e921. 19. Kim EJ, Yuan Y, Liebschutz J, Cabral H, Kazis L. Understanding the digital gap among US adults with disability: cross-sectional analysis of the Health Information National Trends Survey 2013. JMIR.Rehabil. Assist. Technol. 2018;5(1):e3. 20. Tanis ES, Palmer S, Wehmeyer M, et al. Self-report computer-based survey of technology use by people with intellectual and developmental disabilities. Intellect Dev Disabil. 2012;50(1):53e68. 21. Palmer SB, Wehmeyer ML, Davies DK, Stock SE. Family members' reports of the technology use of family members with intellectual and developmental disabilities. J Intellect Disabil Res. 2012;56(4):402e414. 22. Shogren K, Wehmeyer M, Reese R, O'Hara D. Promoting self-determination in health and medical care: a critical component of addressing health disparities in people with intellectual disabilities. J Policy Pract Intellect Disabil. 2006;3(2): 105e113. 23. Krahn GL, Walker DK, Correa-De-Araujo R. Persons with disabilities as an unrecognized health disparity population. Am J Public Health. 2015;105(Suppl 2): S198eS206. 24. Cardell B. Reframing health promotion for people with intellectual disabilities. Glob.Qual.Nurs. Res. 2015;2, 2333393615580305. 25. Stock S, Davies D, O'Hara D. Self-determination, technology and health. In: Schwartz A, Bacon A, O'Hara D, Clark D, eds. Self-Determination And Health. Silver Spring. MD: National Training Initiative on Self-Determination and the Association of University Centers on Disabilities; 2012. 26. Schwartz A, Bacon A, O'Hara D, Davies D, Stock S. Using cognitively accessible survey software to promote self-determination among people with intellectual and developmental disabilities. J. Hum. Dev.Disabil. Soc.Change. 2013;21(1):17e28. 27. White A, Liberatos P, O'Hara D, Davies D, Stock S. Promoting self-determination in health for people with intellectual disabilities through accessible surveys of their health care experiences. J. Hum. Dev.Disabil. Soc.Change. 2013;21(1):29e38. 28. Wehmeyer ML, Smith SJ, Palmer SB, Davies DK, Stock S. Technology use and people with mental retardation. In: Glidden LM, ed. International Review of Research in Mental Retardation. San Diego, CA: Academic Press; 2004.
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
Contents lists available at ScienceDirect
Disability and Health Journal journal homepage: www.disabilityandhealthjnl.com
Brief Report
Technology and social media use by adult patients with intellectual and/or developmental disabilities Patricia A. Patrick a, b, c, *, Izel Obermeyer a, b, Jason Xenakis a, b, Doug Crocitto a, David M. O'Hara a, b a b c
Westchester Institute for Human Development, Valhalla, NY, USA School of Health Sciences & Practices, New York Medical College, Valhalla, NY, USA Department of Pediatrics, New York Medical College, Valhalla, NY, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 6 December 2018 Received in revised form 19 August 2019 Accepted 28 August 2019
Background: Technology and social media offer individuals with intellectual and/or developmental disabilities (I/DD) unique and innovative ways to facilitate active participation in their own healthcare process. What remains unclear is the extent to which devices are currently used by this growing patient population. Objective: To explore the prevalence of technology and social media use, as well as the possible barriers, among adult patients with I/DD. Methods: A cross-sectional study utilizing an anonymous, accessible survey was used to obtain data from all adult patients (18 þ years of age) with I/DD presenting for primary care services at a healthcare facility in New York between September and December of 2016. Results: A total of 370 individuals completed the survey (529 approached, 69.9% response rate). Less than half (44.6%) of respondents used devices such as a tablet, smartphone or desktop; most (86.8%) did not use social media. Only 21.6% of respondents indicated that they use some type of assistive technology. While some respondents (46.0%) were identified by their caregivers as having a disability that would prevent them from learning/using technology, other respondents reported having no challenges (18.0%), needing training and/or ongoing support (7.4%), or being uncertain as to whether they would experience any challenges (15.5%). Conclusions: Many adult patients with I/DD do not use technology and social media that could promote self-determination and participation in their healthcare. Continued efforts must be made to promote technology use among adults with I/DD and to ensure that appropriate training is available for both the individual and his/her caregivers to achieve adoption and utilization. © 2019 Elsevier Inc. All rights reserved.
Keywords: Intellectual disability Developmental disability Assistive technology Social media Patient education Self-determination
Introduction Despite the millions of individuals living with intellectual and/ or developmental disabilities (I/DD) in the United States,1,2 their integration into their communities remains limited.3 More specifically, adults with I/DD are less likely to hold full-time employment or to obtain a post-secondary degree or diploma; they also face poverty or issues that are related to social inclusion.3 Technologydassistive devices, computers, tablets, smartphones and social mediadoffer individuals with I/DD unique and innovative
* Corresponding author. Westchester Institute for Human Development, Cedarwood Hall, Valhalla, NY, 10595, USA. E-mail address: [email protected] (P.A. Patrick).
ways to facilitate their participation in society as consumers, employees, and even as voters.4e6 Such technology also offers the potential for individuals with I/DD to direct their own health care and health care resources as well as achieve greater health literacy, which in turn improves health outcomes.7,8 For example, accessible survey technology gives patients with I/DD the ability to participate in surveys regarding preferences about care and treatment options. What remains unclear, however, is the extent to which technological devices are currently used by the growing patient population of adults with I/DD. A limited number of recent studies have explored the prevalence of technology and social media use among individuals with I/ DD and associated barriers.9e15 Moreover, while social media has been commonly understood as online networking and content sharing via websites and applications,16 the broader literature
https://doi.org/10.1016/j.dhjo.2019.100840 1936-6574/© 2019 Elsevier Inc. All rights reserved.
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
2
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
contains inconsistent terminology and a lack of stable definitions to describe technological devices and advances aimed to assist in the daily activities and inclusion of individuals with I/DD. In the last 10 years, terms have included adaptive technology, assistive technology, instructional technology, web technology, communication technology, mobile technology, virtual technology, and voice recognition technology. Assistive technology, while having no consistent definition, was the most used term throughout the last 10 years to describe technological trends and innovations to support people with I/DD.1 Regardless of descriptive title, a third of such technological devices purchased are not successfully adopted by individuals with I/ DD.17 Barriers to this processdthose beyond the cost of the technology, the most commonly cited challenge18dinclude lack of knowledge and lack of support, both of which impede successful implementation of the device into daily life.16 In addition, individuals with disabilities are less likely to obtain health information from the internet or exchange health information with a provider via the internet due to lack of trust.19 Technology and social media can assist individuals with I/DD in achieving independence and promoting self-determination across many facets of life, especially with respect to healthcare decisionmaking. Therefore, investigators sought to explore the prevalence of use of technology and social media among adult patients with I/ DD. We also sought to learn what additional barriers might exist to the use of technology and social media in the areas of health education and promotion.
collection began, eligible participants were approached by a research assistant and invited to participate in this study while waiting for their visit. Data collection The project survey was created using software that allows survey creators to include images and audio with each question and each response to enhance independent completion by patients with disabilities. A research assistant made a touch-screen device available to participants for the administration of the survey. The 22-question survey took about 10 minutes to complete. If an individual was called to their visit during survey administration, he/she was asked to complete the survey prior to leaving. Participants were able to refuse to complete the survey at any time. Data collection took place over a 4-month period. The survey, which was designed by the investigators, first collects basic, self-reported demographic and clinical informationdage range, gender, race/ethnicity, and primary challenge. That section is followed by questions regarding use of and comfort with technology and social media (see Appendix). Accessible design standards were considered when designing the survey, which was kept at an 8th grade reading level. More specifically, simple vocabulary was used to allow greater and broader comprehension. The answer choices were kept clear and kept to a restricted amount of choices. Investigators limited the number of open-ended questions. Data analysis
Methods Study design A cross-sectional study utilizing an anonymous, accessible survey was used to obtain data from individuals with I/DD. Participants and setting All adult (18 yearsþ) patients presenting for primary care at a healthcare facility in New York between September and December of 2016, regardless of primary diagnosis, were eligible to participate. The facility offers both primary and specialty care to individuals with disabilities, with over 40,000 visits per year by over 5,500 patients. According to reports generated from the site's electronic health record (EHR) using ICD-10 codes; patients have primary diagnoses as follows:
For the overall sample, frequency of categorical responses were calculated and reported; missing data were reported as “no response.” Open-ended responses to such questions as, “What problems might you have in using technology or social media?” were isolated and pulled from the dataset to create response lists. These lists were reviewed independently by two co-investigators to identify themes. For example, if subjects had no problems with using technology, responses given may include “no problems,” “none,” “would have no difficulties” and would give rise to such a noted category as “none.” Investigators compared their identified categories and derived a final list. Once themes were finalized, frequency of responses to these questions were calculated and reported. Responses were also compared based on age strata; such analyses utilized the chi-square test for categorical variables (e.g., yes/no). Results were considered statistically significant at p < 0.05. All analyses were conducted utilizing SPSS v. 22.0. Sample size
Intellectual/Developmental Disabilities Neurotic/Personality Disorders Autistic Spectrum Disorders Mood Disorders Mental Disorders due to Brian Injuries/Other Conditions Schizophrenic Disorders Dementias
52.3% 23.1% 10.1% 6.4% 3.6% 3.5% 1.0%
In addition, 56.2% of the patient population is dually eligible for Medicare and Medicaid, 35.4% are covered by Medicaid, 7.9% carry private insurance and 0.5% are uninsured.
Adult primary care within the facility has 100 adult patients presenting each day, or 500 each week. Assuming 75 patients were to be approached each week (given staff availability) and a response rate of 30%, investigators expected at least 23 responses per week, or 368 responses over the 16-week data collection period. The sample size is sufficient to achieve a 5% margin of error (confidence level ¼ 95%). This study was approved by the Institutional Review Board of New York Medical College, which also granted both a waiver of consent and a waiver of the Health Insurance Portability and Accountability Act (HIPAA) authorization.
Recruitment procedures Results In the month preceding data collection, announcements regarding the study were displayed and made available in waiting areas of the facility. This allowed both individuals and caregivers to become aware of the study prior to being approached. Once data
A total of 370 individuals completed the survey (529 approached, 69.9% response rate). A third of respondents (32.2%) were able to complete the survey independently while the other
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
respondents did so with the help of a parent or caregiver. Age distribution of respondents was as follows: 18e29 years, 22.2%; 30e39 years, 18.9%; 40e49 years, 18.7%; 50e59 years, 23.2%; 60e69 years, 13.2%; and, 70 þ years, 3.8%; 61.1% were male. Half (49.7%) of respondents were white, 31.1% African American, and, 13.2% Hispanic. Most respondents (92.7%) were primary English speakers and lived in a group home 89.5%. Self-reported primary challenge is shown in Table 1. Less than half (44.6%) of respondents indicated they used some type of device from the choices of tablet, smartphone, desktop, laptop or other. Fig. 1 shows device use by age category (p < 0.05). Among those not using any device (n ¼ 205), 30.7% indicated interest in technology as follows: computer/laptop, 42.9%; tablet, 36.5%; and, smartphone, 20.6%. Comments made in response to “If you could have any technology, what would it be?” included: “a tablet for entertainment; to learn things, look things up; ” “I want to try a computer”; “would like a laptop for communication”; “wants his own tablet with learning program”; “tablet with application that allows for better communication”; “phone that has larger type for patients with visual deficits”; and, “laptop with bigger keys,” Table 1 Responses to the survey question, “From the list below, which can be most difficult for you?” N ¼ 370. SURVEY TEXT
N
(%)
Speaking
SURVEY IMAGE
74
(20.0)
Thinking
66
(17.8)
Learning
56
(15.1)
Moving
47
(12.7)
Hearing
29
(7.8)
Seeing
25
(6.8)
Remembering
20
(5.4)
No response
53
(14.4)
3
Just over 21% of respondents indicated that they use some type of assistive technology (e.g., screen readers, alternative input devices). Among those 80 respondents, they specified the primary help provided as follows: in communicating, 70.9%; in doing things faster, 62.5%; in doing things they could not normally do, 62.5%; and, in learning new things, 31.3%. Those using any technology used it mostly at their residence (95.0%), liked using it (97.5%) and were comfortable using it (95.0%). Many respondents (70.3%) have Internet access at their place of residence. Most survey respondents (86.8%) indicated they did not use social media. For the few who did use social media (n ¼ 49), Facebook and Instagram were the most popular choices. Social media use was associated with age: 59.2%, 18e29 years; 28.6%, 30e39 years; 8.2%, 40e49 years; 4.1%, 50e59 years (p < 0.05). None of the subjects in the 60 þ age strata (n ¼ 63) reported using social media. Identified barriers to use of technology and/or social media are shown in Fig. 2. Discussion This study found that more than half of adult patients with I/DD do not use any type of current technological devicedonly 10% reported using a smartphone. Most adult patients also do not use social media. Use of both technology and social media was associated with age; patients under 60 years were more likely to use devices such as desktops, laptops, tablets and smartphones than those over 60 years of age. Nevertheless, technology and social media use was low compared to the general population, perhaps due to many respondents not having the economic resources to purchase such devices. While for some individuals the use of such technology may be difficult, others expressed interest and could either use it independently with training or could develop a comfort level in its use with some training and additional support from caregivers. These findings are consistent with those of similar studies, some conducted up to 20 years ago. Technology has been and continues to be underutilized by individuals with disabilities and barriers included lack of access, expense, training and support, and device maintenance.11e13,15,20,21 Limitations to this study include the use of a brief survey to collect data from patients prior to appointments with their primary care physicians. With time constraints and the desire to complete each survey, some responses could not be explored further to obtain greater explanation or clarification. In addition, for twothirds of our sample, caregivers who transport patients from their residence to the healthcare facility assisted in responding to questions. These caregivers, however, are usually familiar with the patients so responses were likely made by individuals aware of each participant's strengths and challenges. It is important to explore technological options and their role within health education and promotion given the significant health disparities experienced by individuals with I/DD. Adults with I/DD experience poorer health outcomes than people without I/DD as that they live with complex health conditions; have limited access to quality healthcare; have poorly managed chronic conditions, such as hypertension and diabetes; have high prevalence of obesity; miss preventative screenings, i.e. cancer, vision; and have mental health problems. Although they have higher rates of chronic diseases than the general population, adults with disabilities are significantly less likely to receive preventive care. For example, people with cognitive limitations are up to 5 times more likely to have diabetes than the general population while receiving less care for its management.22,23 Technology that supports health education and selfmanagement skills could help reduce such health disparities. Research on instructional methods for people with I/DD have
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
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Fig. 1. Devices used by age category of survey respondents. N ¼ 370.
Fig. 2. Identified barriers to using technology and/or social media. N ¼ 370. * Caregivers indicated that patients would be limited in using technology given difficulty with such functioning as vision, learning, and fine motor skills.
shown that technology focused on promoting health and self-care should include hands-on, interactive components that allow for the development of the required skills as well as meeting daily needs. By enhancing personal development with an emphasis on active participation, feelings of choice, meaning, and purpose are also positively impacted.24 Conclusion Technology offers innovative ways in which individuals with disabilities can promote self-determination in the healthcare environment to improve their health outcomes and satisfaction.25e27 It can be used to record and communicate decision preferences to facilitate the shift from a disease-centered to a person-centered approach to care. Ultimately, by allowing individuals to engage in education and self-care, contribute to
decisions, and, in essence, live more independently, they can experience an improved health status and quality of life.21,28 The current study revealed that, despite its positive potential, technology use remains low among adults with I/DD, with even fewer using social media. In light of these results, continued efforts must be made to promote technology and social media use among this population and to ensure that appropriate training is available for both the individual and his/her caregivers to achieve adoption and utilization, especially in terms of health promotion. Acknowledgements The investigators would like to acknowledge AnneBeth Litt, MD, Medical Director, and Marilyn Klein, MA, CCC-SLP, Director, Speech and Hearing Center, Westchester Institute for Human Development, for their support in the administration of this study.
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840
P.A. Patrick et al. / Disability and Health Journal xxx (xxxx) xxx
Appendix. Examples of questions and accompanying images used to make survey accessible to respondents
5
References 1. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil. 2011;32:419e436. 2. Zablotsky B, Black LI, Blumberg SJ. Estimated Prevalence of Children with Diagnosed Developmental Disabilities in the United States, 2014e2016, NCHS Data Brief No. 291 (DHHS Publication No. 2018e1209). Hyattsville, MD: National Center for Health Statistics; 2017. 3. Manzoor M, Vimarlund V. Digital technologies for social inclusion of individuals with disabilities. Health Technol. 2018;8(5):377e390. 4. Van Laarhoven T, Johnson JW, Van Laarhoven-Myers T, Grider KL, Grider KM. The effectiveness of using a video iPod as a prompting device in employment settings. J Behav Educ. 2009;18(2):119e141. 5. Leopold A, Lourie A, Petras H, Elias E. The use of assistive technology for cognition to support the performance of daily activities for individuals with cognitive disabilities due to traumatic brain injury: the current state of the research. NeuroRehabilitation. 2015;37(3):359e378. 6. Borgestig M, Sandqvist J, Ahlsten G, Falkmer T, Hemmingsson H. Gaze-based assistive technology in daily activities in children with severe physical impairments–an intervention study. Dev Neurorehabil. 2017;20(3):129e141. 7. O'Hara D, Seagriff-Curtin P, Levitz M, Davies D, Stock S. Using personal digital assistants to improve self-care in oral health. J Telemed Telecare. 2008;14:150e151. 8. O'Hara D, Stock SE, Davies DK. Trends in using technology to achieve better health outcomes. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, eds. Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Switzerland: Springer International Publishing; 2016. 9. Raspa M, Fitzgerald T, Furberg RD, et al. Mobile technology use and skills among individuals with fragile X syndrome: implications for healthcare decision making. J Intellect Disabil Res. 2018;62(10):821e832. 10. Wehmeyer ML. The use of assistive technology by people with mental retardation and barriers to this outcome: a pilot study. Technol Disabil. 1995;4:195e204. 11. Wehmeyer ML. National survey of the use of assistive technology by adults with mental retardation. Ment Retard. 1998;36:44e51. 12. Wehmeyer ML. Assistive technology and students with mental retardation: utilization and barriers. J Spec Educ Technol. 1999;14:48e58. 13. Carey AC, Friedman MG, Bryen DN. Use of electronic technologies by people with intellectual disabilities. Ment Retard. 2005;43(5):322e333. 14. Kaye HS, Yeager P, Reed M. Disparities in usage of assistive technology among people with disabilities. Assist Technol. 2008;20:194e203. 15. Tanis ES, Palmer S, Wehmeyer M, et al. Self-report computer-based survey of technology use by people with intellectual and developmental disabilities. Intellect Dev Disabil. 2012;50(1):53e68. 16. Coyle CL, Vaughn H. Social networking: communication revolution or evolution? Bell Labs Tech J. 2008;13(2):13e18. 17. Dawe M. Desperately seeking simplicity: how young adults with cognitive disabilities and their families adopt assistive technologies. In: Proceedings of the al; SIGCHI Conference on Human Factors in Computing Systems. Quebec: Montre 2006:1143e1152. CHI 2006. 18. Boot FH, Owuor J, Dinsmore J, MacLachlan M. Access to assistive technology for people with intellectual disabilities: a systematic review to identify barriers and facilitators. J Intellect Disabil Res. 2018;62(10):900e921. 19. Kim EJ, Yuan Y, Liebschutz J, Cabral H, Kazis L. Understanding the digital gap among US adults with disability: cross-sectional analysis of the Health Information National Trends Survey 2013. JMIR.Rehabil. Assist. Technol. 2018;5(1):e3. 20. Tanis ES, Palmer S, Wehmeyer M, et al. Self-report computer-based survey of technology use by people with intellectual and developmental disabilities. Intellect Dev Disabil. 2012;50(1):53e68. 21. Palmer SB, Wehmeyer ML, Davies DK, Stock SE. Family members' reports of the technology use of family members with intellectual and developmental disabilities. J Intellect Disabil Res. 2012;56(4):402e414. 22. Shogren K, Wehmeyer M, Reese R, O'Hara D. Promoting self-determination in health and medical care: a critical component of addressing health disparities in people with intellectual disabilities. J Policy Pract Intellect Disabil. 2006;3(2): 105e113. 23. Krahn GL, Walker DK, Correa-De-Araujo R. Persons with disabilities as an unrecognized health disparity population. Am J Public Health. 2015;105(Suppl 2): S198eS206. 24. Cardell B. Reframing health promotion for people with intellectual disabilities. Glob.Qual.Nurs. Res. 2015;2, 2333393615580305. 25. Stock S, Davies D, O'Hara D. Self-determination, technology and health. In: Schwartz A, Bacon A, O'Hara D, Clark D, eds. Self-Determination And Health. Silver Spring. MD: National Training Initiative on Self-Determination and the Association of University Centers on Disabilities; 2012. 26. Schwartz A, Bacon A, O'Hara D, Davies D, Stock S. Using cognitively accessible survey software to promote self-determination among people with intellectual and developmental disabilities. J. Hum. Dev.Disabil. Soc.Change. 2013;21(1):17e28. 27. White A, Liberatos P, O'Hara D, Davies D, Stock S. Promoting self-determination in health for people with intellectual disabilities through accessible surveys of their health care experiences. J. Hum. Dev.Disabil. Soc.Change. 2013;21(1):29e38. 28. Wehmeyer ML, Smith SJ, Palmer SB, Davies DK, Stock S. Technology use and people with mental retardation. In: Glidden LM, ed. International Review of Research in Mental Retardation. San Diego, CA: Academic Press; 2004.
Please cite this article as: Patrick PA et al., Technology and social media use by adult patients with intellectual and/or developmental disabilities, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100840