Technology preferences among caregivers of children with hydrocephalus

Naftel, Robert P.; Safiano, Nicole A.; Falola, Michael; Shannon, Chevis N.; Johnston, James M.

doi:10.3171/2012.9.peds12208

Cited by 50 publications

(93 citation statements)

References 28 publications

(44 reference statements)

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“…This finding is also supported by studies demonstrating widespread use of social media among parental groups [13][14][15][16][17][18].…”

Section: Introductionsupporting

confidence: 75%

Sudden Infant Death Syndrome and Safe Sleep on Twitter: Analysis of Influences and Themes to Guide Health Promotion Efforts (Preprint)

Pretorius¹,

Mackert²,

Wilcox³

2018

Preprint

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Background: In the United States, sudden infant death syndrome (SIDS) is the leading cause of death in infants aged 1 month to 1 year. Approximately 3,500 infants die from SIDS and sleeprelated reasons on a yearly basis. Unintentional sleep-related deaths and bed sharing, a known risk factor for SIDS, are on the rise. Furthermore, ethnic disparities exist among those most affected by SIDS. Despite public health campaigns, infant mortality persists. Given the popularity of social media, understanding social media conversations around SIDS and safe sleep may provide the medical and public health communities with the information needed to spread, reinforce, or counteract false information regarding SIDS and safe sleep.Objective: The purpose of this project was to study the social media conversation around SIDS to understand possible influences and guide health promotion efforts, public health research, and enable health professionals to engage in directed communication regarding this topic.Methods: This study used textual analytics to identify topics and extract meanings contained in unstructured textual data. Twitter messages were captured during the months of September, October, and November of 2017. Tweets and retweets were collected using NUVI software in conjunction with Twitter's Search API using the keywords: "sids", "infant death syndrome", "sudden infant death syndrome", and "safe sleep." This returned a total of 41,358 messages, which were analyzed using text-mining and social media monitoring software.Results: Multiple themes were identified, including: recommendations for safe sleep to prevent SIDS, safe sleep devices, the potential causes of SIDS, and how breastfeeding reduces SIDS. Compared to the months of September and November, October (Pregnancy and Infant Loss Awareness Month) demonstrated personal and specific stories of infant loss. The top influencers were news organizations, universities, and health-related organizations.Conclusions: This study offers valuable information regarding the public's perception and opinions regarding SIDS and safe sleep. It highlights the contradicting information the public is exposed to regarding SIDS and the continued controversy of vaccines. This analysis also emphasizes the lack of public health organizations' presence on Twitter compared to the influence of universities and news media organizations. It also demonstrates the prevalence of safe sleep products that are embedded in safe sleep messaging. These findings can assist providers in speaking about relevant topics when engaging in conversation about the prevention of SIDS and the promotion of safe sleep. Further, public health agencies and advocates should utilize social media and Twitter to better communicate accurate health information as well as continue to combat the spread of false information.

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“…This finding is also supported by studies demonstrating widespread use of social media among parental groups [13][14][15][16][17][18].…”

Section: Introductionsupporting

confidence: 75%

Sudden Infant Death Syndrome and Safe Sleep on Twitter: Analysis of Influences and Themes to Guide Health Promotion Efforts (Preprint)

Pretorius¹,

Mackert²,

Wilcox³

2018

Preprint

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“…17,18,90,96,97,118 Shunt obstruction remains a critical challenge and represents the most common point of failure in patients with shunt-dependent hydrocephalus.…”

Section: Bioengineering Advancesmentioning

confidence: 99%

An update on research priorities in hydrocephalus: overview of the third National Institutes of Health-sponsored symposium “Opportunities for Hydrocephalus Research: Pathways to Better Outcomes”

McAllister

Williams

Walker

et al. 2015

JNS

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abbreviatioNs CPC = choroid plexus cauterization; DTI = diffusion tensor imaging; ETV = endoscopic third ventriculostomy; HCRN = Hydrocephalus Clinical Research Network; ICP = intracranial pressure; iNPH = idiopathic NPH; LPA = lysophosphatidic acid; NIH = National Institutes of Health; NPC = neural precursor cell; NPH = normal pressure hydrocephalus; NSC = neural stem cell; PreOL = precursor oligodendroglia; RCT = randomized controlled trial; SVZ = subventricular zone; TNF = tumor necrosis factor; VP = ventriculoperitoneal; VZ = ventricular zone. . International experts gave plenary talks, and extensive group discussions were held for each of the major themes.The conference emphasized patient-centered care and translational research, with the main objective to arrive at a consensus on priorities in hydrocephalus that have the potential to impact patient care in the next 5 years. The current state of hydrocephalus research and treatment was presented, and the following priorities for research were recommended for each theme. 1) Causes of Hydrocephalus-CSF absorption, production, and related drug therapies; pathogenesis of human hydrocephalus; improved animal and in vitro models of hydrocephalus; developmental and macromolecular transport mechanisms; biomechanical changes in hydrocephalus; and age-dependent mechanisms in the development of hydrocephalus. 2) Diagnosis of Hydrocephalus-implementation of a standardized set of protocols and a shared repository of technical information; prospective studies of multimodal techniques including MRI and CSF biomarkers to test potential pharmacological treatments; and quantitative and cost-effective CSF assessment techniques. 3) Treatment of Hydrocephalus-improved bioengineering efforts to reduce proximal catheter and overall shunt failure; external or implantable diagnostics and support for the biological infrastructure research that informs these efforts; and evidencebased surgical standardization with longitudinal metrics to validate or refute implemented practices, procedures, or tests. 4) Outcome in Hydrocephalus-development of specific, reliable batteries with metrics focused on the hydrocephalic 1427

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“…[5][6][7] Caregivers are searching the Internet for answers to questions about their child' s health, often before seeking medical care. 5,[8][9][10][11][12] Social media platforms provide another portal for asking questions and rapidly sharing information about health. 13 Still, given the ubiquity of online information, the variety of health resources has a range of accuracy and reliability.…”

mentioning

confidence: 99%

Access to Digital Technology Among Families Coming to Urban Pediatric Primary Care Clinics

DeMartini¹,

Beck

Klein

et al. 2013

Pediatrics

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WHAT'S KNOWN ON THIS SUBJECT: Internet, smartphones, and online social media offer new platforms for health promotion and disease management. Few studies have evaluated the use of digital technology among families receiving care in an urban pediatric primary care setting.WHAT THIS STUDY ADDS: Caregivers in an urban pediatric primary care setting have access to and frequently use the Internet, smartphones, and online social media. These technologies may help reach a traditionally hard-to-reach population.abstract OBJECTIVE: Digital technologies offer new platforms for health promotion and disease management. Few studies have evaluated the use of digital technology among families receiving care in an urban pediatric primary care setting. METHODS:A self-administered survey was given to a convenience sample of caregivers bringing their children to 2 urban pediatric primary care centers in spring 2012. The survey assessed access to home Internet, e-mail, smartphone, and social media (Facebook and Twitter). A "digital technology" scale (0-4) quantified the number of available digital technologies and connections. Frequency of daily use and interest in receiving medical information digitally were also assessed. RESULTS:The survey was completed by 257 caregivers. The sample was drawn from a clinical population that was 73% African American and 92% Medicaid insured with a median patient age of 2.9 years (interquartile range 0.8-7.4). Eighty percent of respondents reported having Internet at home, and 71% had a smartphone. Ninety-one percent reported using e-mail, 78% Facebook, and 27% Twitter. Ninety-seven percent scored $1 on the digital technology scale; 49% had a digital technology score of 4. The digital technology score was associated with daily use of digital media in a graded fashion (P , .0001). More than 70% of respondents reported that they would use health care information supplied digitally if approved by their child' s medical provider.CONCLUSIONS: Caregivers in an urban pediatric primary care setting have access to and frequently use digital technologies. Digital connections may help reach a traditionally hard-to-reach population.

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Technology preferences among caregivers of children with hydrocephalus

Cited by 50 publications

References 28 publications

Sudden Infant Death Syndrome and Safe Sleep on Twitter: Analysis of Influences and Themes to Guide Health Promotion Efforts (Preprint)

Sudden Infant Death Syndrome and Safe Sleep on Twitter: Analysis of Influences and Themes to Guide Health Promotion Efforts (Preprint)

An update on research priorities in hydrocephalus: overview of the third National Institutes of Health-sponsored symposium “Opportunities for Hydrocephalus Research: Pathways to Better Outcomes”

Access to Digital Technology Among Families Coming to Urban Pediatric Primary Care Clinics

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