A systematic review of the use and effectiveness of social media in child health

A research librarian searched 11 databases in January 2012: Medline, CENTRAL, ERIC, PubMed, CINAHL, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge, and Proquest Dissertation and Theses Database [5]. Dates were restricted to 2000 or later, corresponding to the advent of Web 2.0. No language or study design restrictions were applied. The search was updated in May 2013. The search strategy for Medline is provided in the Additional file 1.

Two reviewers independently screened titles and abstracts of studies for eligibility. The full text of studies assessed as ‘relevant’ or ‘unclear’ was then independently evaluated by two reviewers using a standard form. Discrepancies were resolved by consensus or adjudication by a third party.

Studies were included if they reported primary research, with analytic quantitative designs used to answer whether social media is effective for use in child health, and descriptive and qualitative designs used to provide context to attributes that may contribute to the effectiveness or lack of effectiveness of the tools being studied. Further, studies were included if they focused on children, youth, or their families or non-professional caregivers, and examined the use of a social media tool. Social media was defined according to Kaplan and Haenlein’s classification scheme [6], including: collaborative projects, blogs or microblogs, content communities, social networking sites, and virtual worlds. We excluded studies that examined mobile health (e.g., tracking or medical reference apps), one-way transmission of content (e.g., podcasts), and real-time exchanges mediated by technology (e.g., Skype, chat rooms) [5]. Studies relevant to pediatric mental health were also excluded as they are being evaluated separately in a systematic review currently underway. Outcomes were not defined a priori as they were to be incorporated into our description of the field.

Data were extracted using standardized forms and entered into Microsoft Excel (Microsoft, Redmond, Washington, USA) by one reviewer and verified for accuracy and completeness by another. Reviewers resolved discrepancies through consensus. Extracted data included study and population characteristics, description of the social media tools used, objective of the tools, outcomes measured and results, and authors’ conclusions [7]. Studies that examined social media as one component of a complex intervention were noted as such.

Two reviewers independently assessed the methodological quality of included analytic studies and resolved disagreements through discussion. We used the Cochrane Risk of Bias tool to assess randomized controlled trials (RCTs) and non-randomized controlled trials (NRCTs) [8]. We used a tool for before-after studies that was developed based on the Newcastle-Ottawa Scale [9] and used in a previous review [10]. Quality assessment was not conducted on cross-sectional or qualitative studies as they were used to provide additional context to how social media is being used in child health, rather than to provide estimates of effect.

We described the results of studies qualitatively and in evidence tables. Descriptive statistics were calculated using StataIC 11 (StataCorp, College Station, Texas, USA). Studies were grouped according to target user and study design. When studies provided sufficient data, we calculated standardized mean differences and 95% CIs for the primary outcomes and reported all results in forest plots created using Review Manager, Version 5.2 (The Cochrane Collaboration, Copenhagen, Denmark). We did not pool the results as the primary outcome varied across studies; however, we displayed the information graphically to examine the magnitude of effect of the social media interventions.

While social media interventions were used to target health outcomes in children, youth, and caregivers, adolescents were the most commonly studied population. Two studies were based on acute conditions; 10 on chronic conditions, with clusters in type 1 diabetes (n = 3) and cancer (n = 2); and 13 for health promotion purposes, focusing mainly on healthy diet and exercise (n = 5), sexual health (n = 4), and smoking cessation (n = 2; Tables 2 and 3).

Two studies evaluated social media as an intervention in an acute context: one in families of patients in the pediatric intensive care unit [11] (PICU) and one to help parents of children experiencing infantile spasms [12]. While both focused on pediatric health conditions, social media use was directed towards knowledge translation efforts, providing a source of information for the caregivers. The authors concluded that the interventions were beneficial to parents in both cases (Table 3).

Two studies conducted in populations with chronic health conditions evaluated Zora, a virtual world [16, 17], and the remaining eight studies investigated the use of discussion forums (Table 2) [13‐15, 18‐22]. In each of the 10 studies, the primary objective of the social media tool was to provide support to the pediatric patient (n = 3), the parent or family of the patient (n = 3), or both (n = 4). These tools were often in the form of multi-faceted interventions (n = 5), in which the discussion forum was just one component. Discussion forums appeared alongside condition-specific information, interactive features, and links to other online and physical resources such as camps and support groups. Conditions included cancer, juvenile idiopathic arthritis, renal disease, organ transplants, and type 1 diabetes. Adolescents were included in all studies that were intended for the patient; children, ranging from 4 to 12 years old, were also included in five of these studies [13, 16, 17, 19, 22]. Outcomes in this group of studies were nearly all related to coping or self-efficacy, or perceptions and usage of the intervention. One study measured the impact of the social media tool on a change in a health outcome [15].

Thirteen studies evaluated the use of social media as a health promotion tool. Health promotion efforts were directed at children and adolescents, but rarely at caregivers. The two studies that were exclusively aimed at children were focused on healthy diet and exercise, made use of discussion forums, and were aimed towards children from 8 to 12 years old [26, 27]. The two studies evaluating tools intended for caregivers used online educational strategies incorporating discussion forums [28, 35]. The remaining nine studies evaluated social media use in adolescent populations, covering healthy diet and exercise [23‐25], sexual health [29‐31], smoking cessation [32, 34], and parenting issues [36].

The largest proportion of health promotion studies was in the area of healthy diet and exercise [23‐27]; three of these five studies have been examined in more detail in another systematic review conducted by our group [37]. Although most of the social media tools evaluated were discussion forums, there was more variety in the health promotion studies in the interventions used than for acute or chronic conditions, including investigations of existing, widely used platforms such as Facebook. Four studies evaluated the use of Facebook as an outreach strategy to engage with adolescents in a school setting or in the general public [23, 25, 29, 31]. The primary goals of the interventions in the health promotion category were to effect change in health outcomes, or to act as educational resources.

We included 12 studies that evaluated the effectiveness of a social media intervention versus a comparator; their results are described below.

Data were available from seven RCTs. Six trials evaluated discussion forums and all seven trials included the social media tool as a component of a complex intervention. Only one study [24] compared two social media interventions; two compared the social media intervention to an online tool without the social media component [20, 35], two used a non-technological aspect as the comparison group [34, 36], and two compared social media to no intervention [25, 26]. In all seven RCTs, there was no significant difference in the primary outcome measured between the social media group and the comparator. Two studies [24, 36] used composite measures as primary outcomes and significant benefits were found in individual components. The statistical significance of the primary outcomes in these seven RCTs is in contrast to the authors’ conclusions, in which four studies concluded that the social media intervention had a positive effect (Table 3).

Quality assessment of the RCTs was conducted using the Risk of Bias tool (Table 2) [8]. Two trials were at unclear risk of bias [20, 35] and the remaining five were at high risk of bias [24‐26, 34, 36]. Sequence generation and allocation concealment were poorly reported. While the nature of the intervention precluded blinding of participants, blinding of outcome assessors was only reported in two studies [24, 26]. Attrition was high, leading to high risk of bias in four studies [25, 26, 34, 36]. Selective outcome reporting was not present in any of the studies.

One NRCT [32] and two before-after studies [18, 23] included sufficient data to calculate standardized mean differences. Two studies found no significant difference between groups [23, 32], and the other found a significant benefit of social media using one scale but not another [18]. Despite these results, two studies [18, 32] claimed that the social media intervention had a positive effect (Table 3).

Using the Risk of Bias tool [8] for the NRCT, and the before-after quality assessment tool, all three studies were poor to moderate quality (Table 2). The before-after studies described the intervention well, but lacked detail on the representativeness of the samples and the reliability of the outcome measures. The non-randomized controlled trial was at high or unclear risk of bias regarding allocation, blinding, and incomplete outcome reporting.

Two of the included cross-sectional studies evaluated health outcomes following exposure to a social media intervention [27, 29]. One further cross-sectional study [12] found that approximately 60% of YouTube videos on infantile spasms screened depicted accurate portrayals and 18.5% of videos were considered to be excellent patient resources.

While the social media tools and the conditions and outcomes they aim to address vary widely, we used descriptive, qualitative, and mixed methods studies to explore whether there were overlapping characteristics of social media generally that may help to explain their effectiveness or lack thereof.

Three cross-sectional studies were used to evaluate users’ experiences with social media interventions. Yager et al. [31] investigated the use of a Facebook site as a source of information on sexual health, and found that adolescents appreciated the availability of this resource and the comprehensiveness of the information. Braner et al. [11] and Baum et al. [21] both evaluated tools used to provide support to parents and caregivers and found that user satisfaction was driven by finding the right balance between providing informational and emotional support.

All seven of the qualitative and mixed methods studies that met our inclusion criteria evaluated social media tools that were intended to provide support to their users. Two studied a virtual world and five studied discussion forums.

The two evaluations of Zora, a virtual world designed to help young users explore identity issues, highlighted different aspects of what made the tool successful. In children and adolescents with end-stage renal failure undergoing dialysis, Zora provided an opportunity for distraction from their illness, and a means by which to escape their reality [16]. While healthcare providers felt that it would be an ideal tool to teach their patients about their illness, none of the children endorsed this view. Conversely, in adolescents who had undergone an organ transplant, communication with others who had been through the same experience built a sense of community and was a method of coping with their conditions [17].

Mirroring the findings related to the virtual world, the studies evaluating discussion forums found a dichotomy in that some groups preferred to use the social media tools as a distraction from their illness [13, 22], while others valued the ability to connect with others [14, 15, 19]. One distinction between these two groups was that younger children tended to be included in those studies that presented social media as a diversion, while adolescents were more highly represented in studies that found a benefit in building a social network. In one study of fathers of a child with a brain tumor, connections with others helped them cope by limiting isolation and normalizing their experiences [14]. However, other studies found that parents and caregivers were less likely to feel comfortable participating in an online forum [13, 15]. Other features identified as being important included maintaining a certain level of activity on the forum in order to attract returning users [19], and minimizing access barriers related to technology, such as the use of passwords [19, 22].

We conducted a comprehensive systematic review of the literature following well-endorsed methods [38, 39]. Our results provide a view of how social media is being used in child health, including the target audiences and intended purposes. We included all study designs including qualitative and descriptive research in order to provide information to help understand how these interventions may or may not be effective. These results may help inform the development of future interventions and research. The limitations of this review pertain to the nature of the topic and the methodological quality of the primary research. Specifically, in the majority of studies, social media was used as one component of a complex intervention making it difficult to tease out the specific impact of the social media modalities. Further, the primary research in this area had methodological limitations that should be addressed in future research. For example, in randomized and non-randomized trials, attention should be focused on adequate sequence generation, allocation concealment, and blinding of outcome assessment. Attrition was problematic and may be reflective of the challenge of maintaining engagement with the target audience through the interventions employed. Integrating end-user engagement in the development of the social media tools or strategy may be a step in overcoming this obstacle in future research [40]. Finally, while this review provides a thorough examination of the academic literature, the nature and evolution of social media has left a gap between tools that are currently used and those that have been scientifically evaluated. Other tools may have been developed that were not captured in our search of formal academic investigations. Therefore, the findings of this review may point towards an absence of evidence, rather than evidence of the absence of effectiveness of social media as a strategy for health-related interventions in children and youth.