Mobile technology use and skills among individuals with fragile X syndrome: implications for healthcare decision making

Raspa, Melissa; Fitzgerald, Tania; Furberg, Robert; Wylie, Amanda; Moultrie, Rebecca; DeRamus, Margaret; Wheeler, Anne; McCormack, Lynne

doi:10.1111/jir.12537

Cited by 21 publications

(12 citation statements)

References 44 publications

(76 reference statements)

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“…In various studies, the presence of digital skills is mentioned as an essential element of access to and actual use of eHealth (Hoppestad, 2013; Raspa et al., 2018; Tanis et al., 2012). For this reason, the previous digital experience of participants was extracted from the studies included in this review.…”

Section: Resultsmentioning

confidence: 99%

“…Developing eHealth applications while taking these aspects into account increases the likelihood of actual use in the daily life of people with mild intellectual disability, enabling them to benefit from eHealth in the same way as people in the general population (Raspa et al, 2018;Watfern et al, 2019;Wehmeyer et al, 2004).…”

Section: Discussionmentioning

confidence: 99%

“…Universal Design emphasizes flexibility, a tailored approach, simplicity and intuitive use as well as perceptible information (Damianidou, Foggett, Arthur‐Kelly, Lyons, & Wehmeyer, 2018; Wehmeyer et al., 2004; Wehmeyer, Tassé, Davies, & Stock, 2012). Developing eHealth applications while taking these aspects into account increases the likelihood of actual use in the daily life of people with mild intellectual disability, enabling them to benefit from eHealth in the same way as people in the general population (Raspa et al., 2018; Watfern et al., 2019; Wehmeyer et al., 2004). Although studies reported on the potential of eHealth, optimizing the actual use of eHealth requires that attendance must be paid to the collaboration with service users and their personal network (informal and professional) from the very beginning of eHealth use.…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

eHealth in the support of people with mild intellectual disability in daily life: A systematic review

Oudshoorn

Frielink

Nijs

et al. 2020

Research Intellect Disabil

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Around the world, increasing use is being made of health services and information delivered or enhanced over the Internet or related technologies, also referred to as eHealth (Eysenbach, 2001). This development may primarily be inspired by the potential of eHealth to improve the quality of the care provided while also upholding affordable care (Proudfoot et al., 2011). In addition, eHealth provides an opportunity for personalized, tailor-made, remote and on-demand support and treatment (

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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eHealth in the support of people with mild intellectual disability in daily life: A systematic review

Oudshoorn

Frielink

Nijs

et al. 2020

Research Intellect Disabil

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“…Of the 18 studies that collected data from people with intellectual disability, only four studies stated whether or not the participants had multiple disabilities. The participants with intellectual disability were reported to have fragile X syndrome, 34 Williams syndrome, 35 and, in two cases, autism spectrum disorder. 36,37 Only three of the 18 studies specified the severities of the participants' intellectual disabilities; these were reported as mild, 36 mild to moderate, 38 and borderline to moderate.…”

Section: Participant Characteristicsmentioning

confidence: 99%

Internet Use by People with Intellectual Disability: Exploring Digital Inequality—A Systematic Review

Glencross

Mason

Katsikitis

et al. 2021

Cyberpsychology, Behavior, and Social Networking

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Many people with intellectual disability experience digital inequality due to a lack of Internet access; this is known as the digital divide. Digital inequality is also apparent when people with intellectual disability have Internet access, but only use it for a small number of applications (e.g., watching videos and playing games). Recently, it has been suggested that digital inequality also occurs in situations where some Internet users are less likely than others to translate their online activities to offline resources, including educational outcomes and social capital. The extent to which people with intellectual disability are translating their online activities to offline resources has not been examined. We conducted a systematic and critical review using PRISMA guidelines. The search strategy terms ''intellectual disability'' and ''Internet use'' were used to search the databases: Scopus; Wiley Online Library; Psychiatry Online; Web of Science; CINAHL; and PubMed. Twentyfour studies were found, which described 53 types of Internet use, 48 risks of Internet use, and 28 benefits of Internet use. The data were identified thematically and categorized to facilitate comparisons. The most frequently reported types of Internet use were in the category of social media/social networking (23%), the most common Internet risks were in the category of emotional distress (24%), and the most often reported benefits were in the category of friendships and social connection (33%). The findings indicate that the benefits of Internet use for people with intellectual disability have received much less attention than the risks.

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“…To date, there have been qualitative studies in FXS on topics including but not limited to diagnosis [9,10], communication impairments [11], physician knowledge [12], and technology use [13]. Closely related to the present work, Bailey and colleagues surveyed parents of children with FXS regarding the prevalence of developmental delay and eight other symptoms frequently associated with FXS.…”

Section: Introductionmentioning

confidence: 99%

Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities

et al. 2019

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To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate the main symptoms, daily living challenges, family impact, and treatment priorities for individuals with FXS and their families, which was then distributed to a large mailing list. The survey included both structured questions focused on ranking difficulties as well as qualitative analysis of open-ended questions. It was completed by 467 participants, including 439 family members or caretakers (family members/caretakers) of someone with FXS, 20 professionals who work with a person with FXS, and 8 individuals with FXS. Respondents indicated three main general areas of concern: Anxiety, behavioral problems, and learning difficulties. Important differences were noted, based on the sex and age of the individual with FXS. The results highlight the top priorities for treatment development for family members/caretakers, as well as a small group of professionals, and an even smaller group of individuals with FXS, while demonstrating challenges with “voice of the patient” research in FXS.

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Mobile technology use and skills among individuals with fragile X syndrome: implications for healthcare decision making

Abstract: Mobile technology is a tool that can be used in FXS to build skills and increase independence rather than simply for recreational purposes. Implications for using mobile technology to enhance healthcare decision making are discussed.

Cited by 21 publications

References 44 publications

eHealth in the support of people with mild intellectual disability in daily life: A systematic review

eHealth in the support of people with mild intellectual disability in daily life: A systematic review

Internet Use by People with Intellectual Disability: Exploring Digital Inequality—A Systematic Review

Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities

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