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      The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

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          Abstract

          Background

          When parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them.

          Objective

          The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents.

          Methods

          A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN.

          Results

          The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States.

          Conclusions

          Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.

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          Most cited references45

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          Social Media Use in the United States: Implications for Health Communication

          Background Given the rapid changes in the communication landscape brought about by participative Internet use and social media, it is important to develop a better understanding of these technologies and their impact on health communication. The first step in this effort is to identify the characteristics of current social media users. Up-to-date reporting of current social media use will help monitor the growth of social media and inform health promotion/communication efforts aiming to effectively utilize social media. Objective The purpose of the study is to identify the sociodemographic and health-related factors associated with current adult social media users in the United States. Methods Data came from the 2007 iteration of the Health Information National Trends Study (HINTS, N = 7674). HINTS is a nationally representative cross-sectional survey on health-related communication trends and practices. Survey respondents who reported having accessed the Internet (N = 5078) were asked whether, over the past year, they had (1) participated in an online support group, (2) written in a blog, (3) visited a social networking site. Bivariate and multivariate logistic regression analyses were conducted to identify predictors of each type of social media use. Results Approximately 69% of US adults reported having access to the Internet in 2007. Among Internet users, 5% participated in an online support group, 7% reported blogging, and 23% used a social networking site. Multivariate analysis found that younger age was the only significant predictor of blogging and social networking site participation; a statistically significant linear relationship was observed, with younger categories reporting more frequent use. Younger age, poorer subjective health, and a personal cancer experience predicted support group participation. In general, social media are penetrating the US population independent of education, race/ethnicity, or health care access. Conclusions Recent growth of social media is not uniformly distributed across age groups; therefore, health communication programs utilizing social media must first consider the age of the targeted population to help ensure that messages reach the intended audience. While racial/ethnic and health status–related disparities exist in Internet access, among those with Internet access, these characteristics do not affect social media use. This finding suggests that the new technologies, represented by social media, may be changing the communication pattern throughout the United States.
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            Social media and clinical care: ethical, professional, and social implications.

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              Smartphone and tablet self management apps for asthma.

              Asthma is one of the most common long-term conditions worldwide, which places considerable pressure on patients, communities and health systems. The major international clinical guidelines now recommend the inclusion of self management programmes in the routine management of patients with asthma. These programmes have been associated with improved outcomes in patients with asthma. However, the implementation of self management programmes in clinical practice, and their uptake by patients, is still poor. Recent developments in mobile technology, such as smartphone and tablet computer apps, could help develop a platform for the delivery of self management interventions that are highly customisable, low-cost and easily accessible. To assess the effectiveness, cost-effectiveness and feasibility of using smartphone and tablet apps to facilitate the self management of individuals with asthma. We searched the Cochrane Airways Group Register (CAGR), the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, PsycINFO, CINAHL, Global Health Library, Compendex/Inspec/Referex, IEEEXplore, ACM Digital Library, CiteSeer(x) and CAB abstracts via Web of Knowledge. We also searched registers of current and ongoing trials and the grey literature. We checked the reference lists of all primary studies and review articles for additional references. We searched for studies published from 2000 onwards. The latest search was run in June 2013. We included parallel randomised controlled trials (RCTs) that compared self management interventions for patients with clinician-diagnosed asthma delivered via smartphone apps to self management interventions delivered via traditional methods (e.g. paper-based asthma diaries). We used standard methods expected by the Cochrane Collaboration. Our primary outcomes were symptom scores; frequency of healthcare visits due to asthma exacerbations or complications and health-related quality of life. We included two RCTs with a total of 408 participants. We found no cluster RCTs, controlled before and after studies or interrupted time series studies that met the inclusion criteria for this systematic review. Both RCTs evaluated the effect of a mobile phone-based asthma self management intervention on asthma control by comparing it to traditional, paper-based asthma self management. One study allowed participants to keep daily entries of their asthma symptoms, asthma medication usage, peak flow readings and peak flow variability on their mobile phone, from which their level of asthma control was calculated remotely and displayed together with the corresponding asthma self management recommendations. In the other study, participants recorded the same readings twice daily, and they received immediate self management feedback in the form of a three-colour traffic light display on their phones. Participants falling into the amber zone of their action plan twice, or into the red zone once, received a phone call from an asthma nurse who enquired about the reasons for their uncontrolled asthma.We did not conduct a meta-analysis of the data extracted due to the considerable degree of heterogeneity between these studies. Instead we adopted a narrative synthesis approach. Overall, the results were inconclusive and we judged the evidence to have a GRADE rating of low quality because further evidence is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate. In addition, there was not enough information in one of the included studies to assess the risk of bias for the majority of the domains. Although the other included study was methodologically rigorous, it was not possible to blind participants or personnel in the study. Moreover, there are concerns in both studies in relation to attrition bias and other sources of bias.One study showed that the use of a smartphone app for the delivery of an asthma self management programme had no statistically significant effect on asthma symptom scores (mean difference (MD) 0.01, 95% confidence interval (CI) -0.23 to 0.25), asthma-related quality of life (MD of mean scores 0.02, 95% CI -0.35 to 0.39), unscheduled visits to the emergency department (OR 7.20, 95% CI 0.37 to 140.76) or frequency of hospital admissions (odds ratio (OR) 3.07, 95% CI 0.32 to 29.83). The other included study found that the use of a smartphone app resulted in higher asthma-related quality of life scores at six-month follow-up (MD 5.50, 95% CI 1.48 to 9.52 for the physical component score of the SF-12 questionnaire; MD 6.00, 95% CI 2.51 to 9.49 for the mental component score of the SF-12 questionnaire), improved lung function (PEFR) at four (MD 27.80, 95% CI 4.51 to 51.09), five (MD 31.40, 95% CI 8.51 to 54.29) and six months (MD 39.20, 95% CI 16.58 to 61.82), and reduced visits to the emergency department due to asthma-related complications (OR 0.20, 95% CI 0.04 to 0.99). Both studies failed to find any statistical differences in terms of adherence to the intervention and occurrence of other asthma-related complications. The current evidence base is not sufficient to advise clinical practitioners, policy-makers and the general public with regards to the use of smartphone and tablet computer apps for the delivery of asthma self management programmes. In order to understand the efficacy of apps as standalone interventions, future research should attempt to minimise the differential clinical management of patients between control and intervention groups. Those studies evaluating apps as part of complex, multicomponent interventions, should attempt to tease out the relative contribution of each intervention component. Consideration of the theoretical constructs used to inform the development of the intervention would help to achieve this goal. Finally, researchers should also take into account: the role of ancillary components in moderating the observed effects, the seasonal nature of asthma and long-term adherence to self management practices.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                December 2016
                22 December 2016
                : 18
                : 12
                : e333
                Affiliations
                [1] 1Neonatology Department of Pediatrics Indiana University Health Physicians Indianapolis, INUnited States
                [2] 2Department of Social and Behavioral Sciences Richard M. Fairbanks School of Public Health Indiana University Indianapolis, INUnited States
                [3] 3Riley Child Development Center Department of Pediatrics Indiana University School of Medicine Indianapolis, INUnited States
                [4] 4Neonatology Department of Pediatrics Indiana University School of Medicine Indianapolis, INUnited States
                Author notes
                Corresponding Author: Beth DeHoff badehoff@ 123456iu.edu
                Author information
                http://orcid.org/0000-0002-2695-5978
                http://orcid.org/0000-0002-6056-4153
                http://orcid.org/0000-0002-9768-7333
                http://orcid.org/0000-0002-7512-3449
                Article
                v18i12e333
                10.2196/jmir.6722
                5216258
                28007689
                c9557655-79c9-4420-b723-281cb3aab18b
                ©Beth DeHoff, Lisa K Staten, Rylin Christine Rodgers, Scott C Denne. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 22.12.2016.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 1 October 2016
                : 20 October 2016
                : 27 October 2016
                : 23 November 2016
                Categories
                Original Paper
                Original Paper

                Medicine
                health communication,child,social media,health education,health resources,early childhood,disability,neonatal intensive care unit,family,maternal-child health services

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