Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors

Background: Peer support services have the potential to support children who survive cancer by handling the physical, mental, and social challenges associated with survival and return to everyday life. Involving the children themselves in the design process allows for adapting services to authentic user behaviors and goals. As there are several challenges that put critical requirements on a user-centered design process, we developed a design method based on personas adapted to the particular needs of children that promotes health and handles a sensitive design context. Objective: The purpose of this study was to evaluate the effects of using child personas in the development of a digital peer support service for childhood cancer survivors. Methods: The user group’s needs and behaviors were characterized based on cohort data and literature, focus group interviews with childhood cancer survivors (n=15, 8-12 years), stakeholder interviews with health care professionals and parents (n=13), user interviews, and observations. Data were interpreted and explained together with childhood cancer survivors (n=5) in three explorative design workshops and a validation workshop with children (n=7). Results: We present findings and insights on how to codesign child personas in the context of developing digital peer support services with childhood cancer survivors. The work resulted in three primary personas that model the behaviors, attitudes, and goals of three user archetypes tailored for developing health-promoting services in this particular use context. Additionally, we also report on the effects of using these personas in the design of a digital peer support service called Give Me a Break. Conclusions: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that were successfully used to design and develop health-promoting services for children in vulnerable life stages. The child-personas serve as effective collaboration and communication aids for both internal and external purposes.
Journal of Medical Internet Research

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Background: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. Objective: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. Methods: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. Results: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. Conclusions: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.
Journal of Medical Internet Research

Parent-Focused Childhood and Adolescent Overweight and Obesity eHealth Interventions: A Systematic Review and Meta-Analysis

Background: Effective broad-reach interventions to reduce childhood obesity are needed, but there is currently little consensus on the most effective approach. Parental involvement in interventions appears to be important. The use of eHealth modalities in interventions also seems to be promising. To our knowledge, there have been no previous reviews that have specifically investigated the effectiveness of parent-focused eHealth obesity interventions, a gap that this systematic review and meta-analysis intends to address. Objective: The objective of this study was to review the evidence for body mass index (BMI)/BMI z-score improvements in eHealth overweight and obesity randomized controlled trials for children and adolescents, where parents or carers were an agent of change. Methods: A systematic review and meta-analysis was conducted, which conforms to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement. Seven databases were searched for the period January 1995 to April 2015. Primary outcome measures were BMI and/or BMI z-score at baseline and post-intervention. Secondary outcomes included diet, physical activity, and screen time. Interventions were included if they targeted parents of children and adolescents aged 0-18 years of age and used an eHealth medium such as the Internet, interactive voice response (IVR), email, social media, telemedicine, or e-learning. Results: Eight studies were included, involving 1487 parent and child or adolescent dyads. A total of 3 studies were obesity prevention trials, and 5 were obesity treatment trials. None of the studies found a statistically significant difference in BMI or BMI z-score between the intervention and control groups at post-intervention, and a meta-analysis demonstrated no significant difference in the effects of parent-focused eHealth obesity interventions compared with a control on BMI/BMI z-score (Standardized Mean Difference −0.15, 95% CI −0.45 to 0.16, Z=0.94, P=.35). Four of seven studies that reported on dietary outcomes demonstrated significant improvements in at least 1 dietary measurement, and 1 of 6 studies that reported on physical activity outcomes demonstrated significant improvements compared with the control. The quality of the interventions was generally not high; therefore, these results should be interpreted with caution. Conclusion: It is recommended that larger, longer duration, high-quality parent-focused eHealth studies are conducted, which transform successful components from face-to-face interventions into an eHealth format and target younger age groups in particular. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews: CRD42015019837; http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42015019837 (Archived by WebCite at http://www.webcitation.org/6ivBHvBhq)
Journal of Medical Internet Research