Technology and social media use by adult patients with intellectual and/or developmental disabilities

BackgroundTechnology 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.ObjectiveTo explore the prevalence of technology and social media use, as well as the possible barriers, among adult patients with I/DD.MethodsA cross-sectional study utilizing an anonymous, accessible survey was used to obtain data from all adult patients (18 + years of age) with I/DD presenting for primary care services at a healthcare facility in New York between September and December of 2016.ResultsA 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%).ConclusionsMany 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.     

Disability advocacy messaging and conceptual links to underlying disability identity development among college students with learning disabilities and attention disorders

BackgroundLearning disabilities and attention disorders (LD/AD) are highly prevalent neurodevelopmental conditions that influence developmental trajectories and whose impacts exist throughout the life course. Self-advocacy skills are critical for college students with LD/AD, which are underpinned by understanding of self and one's disability.ObjectiveThis study examined disability advocacy messaging included in projects created by college students with LD/AD, compared patterns in disability messaging to existing disability identity models, and explored changes in disability messaging during receipt of holistic campus-based LD/AD supports.MethodsParticipants were 52 undergraduates with LD/AD enrolled in a larger study. This one-group analysis involved qualitative exploration of the projects’ topical content, use of grounded theory procedures for conceptualizing the data, and quantitative analysis to explore changes over time in disability advocacy messaging.ResultsParticipants messaged a broad range of disability-related topics. A five-level theoretical model of disability messaging was created from the textual data. The model evinces parallels to existing disability identity development models. A significant (p < .01) positive shift in disability messaging was observed in a comparison of messages from participants’ first and last projects submitted over the four-semester period of study involvement.ConclusionStudy findings support conceptual linkages among disability messaging and disability identity development. The resultant continuum model suggests a potential extension of existing disability identity development paradigms. Shifts in disability messaging provide preliminary evidence for potential personal and institutional benefits of engaging college students with LD/AD in disability-focused project creation.     

Spousal support and self-determined physical activity in individuals with multiple sclerosis: A theory-informed qualitative exploration

BackgroundIndividuals with multiple sclerosis (MS) tend to exhibit high levels of sedentary behavior which contributes to increased disability and comorbidity. Understanding what factors underlie the motivation to be physically active in this group is therefore important.ObjectiveThis theory-informed qualitative study explored spousal support and behavior in fostering self-determined physical activity engagement of adults with MS.MethodsEight couples were interviewed using a semi-structured interview guide derived from Self-Determination Theory.ResultsAnalysis of transcribed audio recordings revealed that supportive and empathetic spousal communication, encouragement and expectations regarding physical activity, and bonding through co-participation increased feelings of relatedness. In addition, co-planning and problem-solving around physical activity and serving as a behavioral model facilitated perceptions of competency, while spouses who valued their partners’ independence and offered choice enhanced autonomous motivation for physical activity.ConclusionsInsight into the marital context that supports self-determined physical activity decisions of individuals with MS may better inform family-oriented health promotion approaches in this group.     

Men having sex with men and the HPV vaccine in France: A low vaccine coverage that may be due to its infrequent proposal by physicians

IntroductionIn France, the human papilloma (HPV) vaccine is recommended to all female adolescents, and since 2016 to men having sex with men (MSM) under the age of 27. Here, we aimed to explore HPV vaccine coverage in adult MSM living in France.MethodsWe elaborated an anonymous online questionnaire targeting MSM and disseminated it between October 7, 2018 and January 15, 2019 by various means, including a Facebook® discussion forum for pre-exposure prophylaxis (PrEP) users.ResultsOverall, 2094 participants completed the questionnaire (mean age 35.4 ± 11 years); 25.8% were in the age class targeted by the HPV vaccine recommendation; 16.1% were in a PrEP program. On a 1–10 scale, they evaluated being “in favor of vaccination” at a median of 10, and general vaccine usefulness and harmfulness at medians of 10 and 2, respectively; 62.4% considered that the HPV vaccine was rather not or not at all dangerous. Those using PrEP had better perceptions of vaccination in general and of the HPV vaccine in particular. For the 1728 participants with a family physician, he/she had proposed the HPV vaccine in 9.9% of cases (9.1% of those in the targeted age class [<27 years]). Overall, 1994 knew their HPV vaccine status; 8.0% had received at least 1 dose of the vaccine, including 17.9% of those in the targeted age class (and 52.2% among the 40 participants in this age group who received PrEP). When the 1935 participants who declared to be unvaccinated against HPV were asked whether they would accept to be vaccinated, 34.4% answered “rather yes” and 45.5% “definitely yes”.ConclusionHPV vaccine coverage is low among French MSM. Our results suggest that this trend has more to do with the infrequent proposals made by clinicians than with negative vaccine perceptions.     

Pneumonia prevention: Cost-effectiveness analyses of two vaccines among refugee children aged under two years,Haemophilus influenzae type b-containing and pneumococcal conjugate vaccines,during a humanitarian emergency,Yida camp,South Sudan

By September 2013, war between Sudan and South Sudan resulted in >70,000 Sudanese refugees and high pneumonia incidence among the 20,000 refugees in Yida camp, South Sudan. Using Médecins Sans Frontières (MSF)-provided data and modifying our decision-tree models, we estimated if administering Haemophilus influenzae type b (Hib)-containing (pentavalent vaccine, also with diphtheria pertussis and tetanus [DPT] and hepatitis B) and pneumococcal conjugate (PCV) vaccines were cost-effective against hospitalized pneumonia. Among children <2 years old, compared with no vaccination, one- and two-doses of combined Hib-containing and PCV would avert an estimated 118 and 125 pneumonia cases, and 8.5 and 9.1 deaths, respectively. The cost per Disability-Adjusted-Life-Year averted for administering combined one- and two-doses was US$125 and US$209, respectively. MSF demonstrated that it was possible to administer these vaccines during an emergency and our analysis found it was highly cost-effective, even with just one-dose of either vaccine. Despite unknown etiology, there is strong field and now economic rationale for administering Hib and PCV during at least one humanitarian emergency.     

Effects of home-based Voluntary Counselling and Testing on HIV-related stigma: Findings from a cluster-randomized trial in Zambia

HIV-related stigma continues to be a prominent barrier to testing, treatment and care. However, few studies have investigated changes in stigma over time and the factors contributing to these changes, and there is no evidence of the impact of HIV testing and counselling on stigma. This study was nested within a pair-matched cluster-randomized trial on the acceptance of home-based voluntary HIV counselling and testing conducted in a rural district in Zambia between 2009 and 2011, and investigated changes in stigma over time and the impact of HIV testing and counselling on stigma. Data from a baseline survey (n = 1500) and a follow-up survey (n = 1107) were used to evaluate changes in stigma. There was an overall reduction of seven per cent in stigma from baseline to follow-up. This was mainly due to a reduction in individual stigmatizing attitudes but not in perceived stigma. The reduction did not differ between the trial arms (β = −0.22, p = 0.423). Being tested for HIV was associated with a reduction in stigma (β = −0.57, p = 0.030), and there was a trend towards home-based Voluntary Counselling and Testing having a larger impact on stigma than other testing approaches (β = −0.78, p = 0.080 vs. β = −0.37, p = 0.551), possibly explained by a strong focus on counselling and the safe environment of the home. The reduction observed in both arms may give reason to be optimistic as it may have consequences for disclosure, treatment access and adherence. Yet, the change in stigma may have been affected by social desirability bias, as extensive community mobilization was carried out in both arms. The study underscores the challenges in measuring and monitoring HIV-related stigma. Adjustment for social desirability bias and inclusion of qualitative methods are recommended for further studies on the impact of HIV testing on stigma.     

Molecular epidemiology of HIV-1 infection in Europe: An overview

Human Immunodeficiency Virus type 1 (HIV-1) is characterised by vast genetic diversity. Globally circulating HIV-1 viruses are classified into distinct phylogenetic strains (subtypes, sub-subtypes) and several recombinant forms. Here we describe the characteristics and evolution of European HIV-1 epidemic over time through a review of published literature and updated queries of existing HIV-1 sequence databases. HIV-1 in Western and Central Europe was introduced in the early-1980s in the form of subtype B, which is still the predominant clade. However, in Eastern Europe (Former Soviet Union (FSU) countries and Russia) the predominant strain, introduced into Ukraine in the mid-1990s, is subtype A (A_FSU) with transmission mostly occurring in People Who Inject Drugs (PWID). In recent years, the epidemic is evolving towards a complex tapestry with an increase in the prevalence of non-B subtypes and recombinants in Western and Central Europe. Non-B epidemics are mainly associated with immigrants, heterosexuals and females but more recently, non-B clades have also spread amongst groups where non-B strains were previously absent - non-immigrant European populations and amongst men having sex with men (MSM). In some countries, non-B clades have spread amongst the native population, for example subtype G in Portugal and subtype A in Greece, Albania and Cyprus. Romania provides a unique case where sub-subtype F1 has predominated throughout the epidemic. In contrast, HIV-1 epidemic in FSU countries remains more homogeneous with A_FSU clade predominating in all countries. The differences between the evolution of the Western epidemic and the Eastern epidemic may be attributable to differences in transmission risk behaviours, lifestyle and the patterns of human mobility. The study of HIV-1 epidemic diversity provides a useful tool by which we can understand the history of the pandemic in addition to allowing us to monitor the spread and growth of the epidemic over time.     

Recreational drug use: an emerging concern among venue-based male sex workers in China

A 2009 survey of 418 venue-based male commercial sex workers in Shenzhen, China revealed that 19.9% used recreational drugs. Consistent condom use by drug users was lower than that by nonusers. HIV, syphilis, and herpes simplex virus 2 prevalences were higher among drug users. Prevention programs need to address drug use among male commercial sex workers in China.