January 2018 VOL 9, NO 1

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Original Research

Social Media Use Among Parents of Young Childhood Cancer Survivors

Justin Wilford, PhD; Kathryn Osann, PhD; Lari Wenzel, PhD 

Background: Given the high level of need for childhood cancer survivorship health education and preventive health behavior change, social media represent important resources for parents to engage with experts and peers over survivorship health.

Objective: This survey of parents of young and adolescent (<13 years) childhood cancer survivors examined their social media use and perceptions in the context of substantial unmet needs for survivorship information. Methods: A cross-sectional survey of 114 parents, recruited through childhood cancer online social support groups, was used to examine parent social media use and perception on specific platforms. Results: Parents reported high levels of social media use, with 80% reporting daily use. Facebook was the most commonly used social media platform by a wide margin. Among parents who have used the respective social media platforms, several were endorsed as being “good” or “extremely good” for sharing survivorship-related preventive health information. Facebook was endorsed by 76% of its users, Twitter and Pinterest by 59%, Google+ by 52%, and Instagram by 40%. Demographic variables were not associated with parent social media use or perception of utility for preventive health. Conclusion: Parents report high levels of social media use, making new friends through social media, and find social media potentially good sources for sharing and receiving survivorship-related health information. Facebook is used most extensively in this population. As the survival rate for all childhood cancers has risen, so has the number of childhood cancer survivors. Over 420,000 childhood cancer survivors (CCSs) are alive in the United States, and 1 in 750 adults is a childhood cancer survivor.1 This welcome news is counterbalanced by the growing recognition of the long-term chronic health risks faced by survivors. It is estimated that by age 45 years the predicted cumulative prevalence among CCSs is 95.5% for any chronic health condition, and 80.5% for a life-threatening health condition.2 Survivors are at inordinate risk for a wide variety of chronic diseases,3,4 with the risk increasing disproportionately with age compared with siblings5 and healthy controls.6 The latest edition of The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers issued by the Children’s Oncology Group Late Effects Committee recommends preventive health education to mitigate the wide-ranging late effects from different treatment exposures.7 Promoting preventive health behaviors for survivors early in the childhood cancer continuum is an especially important aspect of reducing lifelong risks for chronic disease.8,9 Thus, parents of young survivors play an important role in increasing risk awareness and promoting preventive health behaviors in childhood and adolescence. Not only do parents strongly influence health behaviors of their children in the general population,10-12 evidence suggests that survivors are especially receptive to health information (such as health behavior education13 or survivorship transition education14) provided by their parents. The question of how best to provide such health promotion remains unanswered. Evidence suggests current CCS follow-up care models may lack the capacity to adequately follow current guidelines, especially in supporting and maintaining preventive health promotion among CCSs and their parents.8,15,16 The paucity of CCS preventive health promotion is evident in the strikingly low knowledge of health risks and adherence to preventive health behaviors among adult survivors of childhood cancer.15,17-19 It is in this context that novel health promotion strategies and delivery methods are most needed. Social media represent particularly promising platforms for the design and delivery of high-quality survivorship health information to parents of young CCSs. Due to their growing popularity, especially among parents, social media are presently untapped resources for parents to engage with experts and peers over long-term survivorship health. Social media have emerged in the past decade as ubiquitous, innovative, and potentially powerful tools for health information sharing and health behavior change. For example, social media interventions targeting various health behaviors from tobacco use20 to physical activity21 to diet22 demonstrate the enthusiasm for and potential of this technology. However, at present, little research has been conducted on the use of and preference for social media among parents of CCSs. This is a striking lacuna given that, according to the Pew Research Center, 91% of all parents use the Internet whether on a computer or a mobile device, a significantly higher percentage than non-parent adults (77%).23 And among these Internet-using parents, 75% are active on social media. Furthermore, parents of CCSs express desire for online survivorship health information.24 Thus, a potentially important resource for survivorship health promotion is parents’ social media social network, which includes other parents of CCSs. The purpose of this descriptive study was to assess childhood cancer parent use of social media and platform preferences and investigate parents’ perceptions of social media as tools for sharing health information. Methods Study Sample Study participants were recruited through 2 large US-based childhood cancer parent support organizations with online membership: MaxLove Project (www.max loveproject.org) and Momcology (www.momcology.org). Organizations were identified through preliminary qualitative interviews. Following approval by the Institutional Review Board of the University of California, Irvine, each organization e-mailed and posted on their social media accounts recruitment messages that included direct weblinks to an anonymous online survey. The focus of the survey was on survivorship-related preventive health and parents of CCSs who were most likely to have a high degree of control over health behaviors. Thus, eligibility criteria for participation were: (1) parent of a survivor of pediatric solid tumor or blood cancer; (2) at least 18 years of age; (3) child is at least 1 year off treatment; (4) child is under 13 years old; and (5) English-speaking. Participants electronically confirmed eligibility criteria and provided informed consent at the beginning of the online survey. Survey Measure and Methods The online survey was developed using data from preliminary qualitative interviews of parents of childhood cancer patients and survivors, as well as recent reviews and original research of parental use of social media.23,25-27 The survey included items on demographics, disease- and treatment-related variables, online friend-making, and online social network use and perceptions. Social media use was explored using a question matrix with the lead question: “Which of the following social media sites do you use?” It was followed by a matrix of 8 fields that could be answered on a 6-point Likert-type scale that ranged from “Never” to “Every day.” The fields were specific social media platforms listed in alphabetical order: CaringBridge, Facebook, Google+, Instagram, Inspire, Pinterest, Tumblr, Twitter, and “Other.” Friend-making on social media was explored using a question matrix with the lead question: “On which social media sites have you made new friends?” It was followed by a matrix of the same social media fields listed above but that could be answered either “Yes” or “No.” Parent perception of suitability of specific social media for sharing preventive health-related information was explored using a question matrix with the lead question: “Which social media sites do you think are good for sharing and receiving reliable and high-quality information on diet, physical activity, and other healthy behaviors?” It was followed by a matrix of the same social media fields listed above but that could be responded to on a 4-point Likert-type scale ranging from “Not at all” to “Extremely good.” Statistical Methods Demographic, disease- and treatment-related characteristics, and social media–related variables were summarized using descriptive statistics. Associations between demographic variables and each of the preventive behavior subfields were explored using Fisher’s exact test, univariate logistic regression, and multivariate logistic regression. Each social media question matrix was transformed into a dichotomous variable to be used as dependent variables in logistic regression models. Social media use was transformed into a dichotomous variable where 1 represented daily use of at least 1 social media. Friend-making on social media was transformed into a dichotomous variable where 1 represented having made friends on at least 1 social media platform, and 0 indicating having made no friends on any social media platform. Parent perception of suitability of social media for preventive health-sharing was transformed into a dichotomous variable where 1 represented endorsing at least 1 social media as “Good” or “Extremely good.” Stata 14.2 was used for all descriptive and inferential analyses. Results A total of 114 participants confirmed eligibility and provided informed consent. Table 1 presents participant and child demographics. Consistent with the gender distribution of the membership of the participating nonprofit organizations (MaxLove Project and Momcology), the sample consisted of 108 mothers (95%) and 6 fathers (5%) with an average age of 38.5 years (SD, 5.2), and average age for survivors of 7.7 years (SD, 2.8). The majority of the sample identified as non-Hispanic white (n = 95; 83%), were married, not separated (n = 95; 83%), and had a college degree or higher (n = 75; 66%). The most common diagnosis for survivors in this sample was leukemia (all types) (n = 52; 46%), followed by brain tumor (n = 19; 17%), sarcoma (n = 13; 11%), neuroblastoma (n = 10; 9%), Wilms’ tumor (n = 9; 8%), and non-Hodgkin lymphoma (n = 2; 2%). The majority of survivors (n = 86; 75%) had been off treatment for less than 5 years. All were off treatment for at least 1 year. Parents reported high levels of social media use, with 80% reporting daily use. One hundred percent of participants report using 2 or more social media platforms at least once a month. Use of specific social media platforms is presented in Figure 1. Facebook was the most commonly used social media platform by a wide margin; 78% of parents reported using it every day. The next most used social media platform was Instagram, with 15% of parents reporting daily use. Parents reported making new friends on Facebook (86%), followed by Instagram (22%) and Twitter (10%). Among parents who have used the specific respective social media platforms, several were endorsed as being “good” or “extremely good” for sharing survivorship-related preventive health information. Facebook was endorsed by 76% of its users, Twitter and Pinterest by 59%, Google+ by 52%, and Instagram by 40%. Borderline significant associations were detected between education and friend-making on social media and between ethnicity and daily use of social media (Table 2). As presented in Figure 2, a higher percentage of parents with a bachelor’s degree or higher reported making new friends on any social media platform versus parents with less than a bachelor’s degree (91% vs 78%; P = .079). Additionally, as presented in Figure 3, a higher percentage of white parents (76%) reported daily use of social media versus nonwhite parents (58%). Due to the low number of nonwhite parents, however, these results should be interpreted with caution. Being married was positively associated with social media use in an unadjusted model (odds ratio [OR], 4.50; 95% CI, 1.49-13.51) and remained significant in a model adjusted for education and ethnicity (OR, 4.67; 95% CI, 1.51-14.47). Treatment-related variables, parent age, child age, and time from treatment were not associated with the amount of parents’ social media use, parents’ friend-making on social media, or whether parents thought social media platforms were good for sharing and receiving health information. Examination of associations between social media use and developing friendships on social media indicated that there was a strong association between the amount of time parents spent on social media and their reporting having made new friends on social media (OR, 10.4; 95% CI, 2.53-42.81). However, neither daily social media use nor friend-making on social media were associated with whether parents thought social media were good for sharing and receiving preventive health information. Discussion Despite increased focus on innovative models of survivorship care for CCSs and their caregivers, little is known about the use of a set of potentially powerful tools, namely social media, among parents of young CCSs. Our study showed that these parents, recruited from online support groups, report high levels of social media use and making new friends through social media. Many also find different social media platforms potentially good sources for sharing and receiving survivorship-related health information. Although parents reported using different social media platforms in varying degrees, Facebook was endorsed as the primary social media platform for daily use and making new friends, and also for its potential as a method for sharing survivorship preventive health information. Demographic and treatment-related characteristics were generally unrelated to social media use, although education and marital status were associated with making friends on social media and daily use of social media, respectively. Parents who report using social media daily have higher odds of making new friends on social media. However, it is yet to be determined what proportion of these new friends are other parents of CCSs, and how much and of what quality survivorship-related information is being shared. Nevertheless, these findings suggest that among parents of young CCSs who are already active online, social media use is common and frequent. This has several implications for the design and evaluation of survivorship health promotions targeted at parents of survivors. First, when considering methods to disseminate new and meaningful health information for survivors and their parents, social media should be considered a primary health communication method. Further, the popularity, expansive geographic reach, asynchronous and flexible timing, and affordance for connecting parents to survivorship health professionals as well as other parents of survivors make social media an advantageous modality for survivorship health promotion in this population. Not only do most parents in our sample view different social media platforms as good for sharing preventive health information, they also see these platforms as especially good for making new friends. This leads to the second implication, which pertains to social media’s potential for leveraging social support in service of increasing knowledge of survivorship health risks and changing survivors’ preventive health behaviors. Parents in our sample who use social media daily are 10 times as likely to make new friends on social media as those who use it less than daily. Interventions that encourage daily social media interaction between parents are likely to result in strengthened social ties between parents.28,29 Evidence suggests that strengthened social ties among individuals who share similar disease status can be leveraged to increase health-related knowledge and improved disease-related behaviors.30-32 The third implication is that some popular social media platforms in mHealth research may not be suitable for this population. For example, Twitter is a social media platform that has been investigated in the context of weight loss,33 smoking cessation,34 mental health,35 and exercise.36 However, in this sample, only 2% of parents used Twitter daily compared with 78% who used Facebook daily and 15% who used Instagram daily. Interventions that would require parents to engage daily on a social media platform that they are not already using every day may result in low adherence. Although there are compelling reasons for researchers to prefer Twitter or other social media platforms,37 the popularity of Facebook among parents should make it a more commonly studied platform for social media interventions. Fourth, it may be important to consider not only how often parents are already using a social media platform, but also their expectations of how appropriate the platform is for sharing health-related information. For example, our results show that Instagram was reported to be used much more often than Twitter (15% daily use vs 2% daily use), but among their respective daily users, Twitter was seen to be better than Instagram for sharing health information (59% vs 49%). However, given the total number of daily users of these platforms in this sample, these differences should be interpreted with caution. Although little attention has been paid to social media use among parents of CCSs, these results support the findings in research on social media use in other populations. Among children and their caregivers in general, Hamm and colleagues25,26 recently reviewed a diverse and growing body of literature that demonstrates an interest among caregivers in social media, a focus by researchers on health promotion via social media, and an acknowledgment of Facebook as particularly appropriate for caregivers. Other studies have reviewed the efficacy of online support groups for parents while not specifically focusing on social media.27,28,38 Findings showed that parents reported receiving emotional and informational support through such groups, but the groups varied widely in format from web-based discussion forums to e-mail listservs to Facebook groups. There were many other differences between the online groups that made it impossible to isolate the features that contributed to parent-reported social support. A qualitative study of 3 online message boards (which may qualify as social media depending on whether they allow users to create personal profiles and view others’ personal profiles) for parents of childhood cancer patients demonstrated that parents were eager to use such technology to give and receive various types of social support, but that it was difficult to maintain long-term engagement.39 Barriers reported by Coulson and Greenwood,39 such as using a new and separate website, asynchronous interactions, and limitations in sharing personal information (which parents reported wanting to share with other parents), may be obviated by the use of social media platforms that parents are already using daily, allow for both asynchronous and synchronous interactions, and have abundant affordances for the sharing of personal information. Limitations This study has several important limitations. First, the sample was selected through a convenience method and from only 2 childhood cancer parent support groups. This could bias our sample in a number of ways. Parents who are most frequently online are most likely to have seen the recruitment letter and responded. Also, both support groups obtain new members largely through word of mouth and parents searching online. Thus, the population in each support group is likely to be composed of social media–savvy parents. However, in light of recent research showing that parents in general are the most active adult population on social media,23 these social media–savvy parents likely represent a majority of all parents of CCSs in the United States. Furthermore, the only significant predictor of the amount of social media use among parents in this sample was marital status, suggesting that demographic factors such as age and education are not a source of selection bias. The second limitation was that the study was cross-sectional and thus unable to show whether and how parent social media use is changing in a rapidly evolving technological landscape. Changes over time in different social media platforms may lead to changes in type and frequency of social media usage among parents. Third, the sample lacked sufficient diversity in ethnicity. Although this is not an unusual feature in observational studies of parents of CCSs,40-42 a lack of ethnic diversity makes it difficult to generalize the findings outside of non-Hispanic white mothers. Conclusion Parents of young CCSs who are already online frequently use social media, report having made new friends through social media, and perceive particular social media platforms to be good for sharing preventive health information. Parents report using Facebook far more than any other social media platform. Importantly, child treatment factors and parent demographic factors (except for marital status) were not predictive of social media use or perceptions of social media’s utility for survivorship health education, suggesting that social media is broadly used and acceptable in this population. Conflicts of Interest The authors have no conflicts of interest to declare. References 1. Ward E, DeSantis C, Robbins A, et al. Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin. 2014;64:83-103. 2. Hudson MM, Ness KK, Gurney JG, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309:2371-2381. 3. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355:1572-1582. 4. Phillips SM, Padgett LS, Leisenring WM, et al. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomarkers Prev. 2015;24:653-663. 5. Armstrong GT, Oeffinger KC, Chen Y, et al. Modifiable risk factors and major cardiac events among adult survivors of childhood cancer. J Clin Oncol. 2013;31:3673-3680. 6. Slater ME, Steinberger J, Ross JA, et al. Physical activity, fitness, and cardiometabolic risk factors in adult survivors of childhood cancer with a history of hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2015;21:1278-1283. 7. Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer. Monrovia, CA: Children’s Oncology Group; 2013. 8. Ford J, Barnett M, Werk R. Health behaviors of childhood cancer survivors. Children (Basel). 2014;1:355-373. 9. Tonorezos ES, Sharp L. Health promotion for adolescent leukemia survivors. Pediatr Blood Cancer. 2013;60:893-894. 10. Elliot DL, Lindemulder SJ, Goldberg L, et al. Health promotion for adolescent childhood leukemia survivors: building on prevention science and ehealth. Pediatr Blood Cancer. 2013;60:905-910. 11. Craigie AM, Lake AA, Kelly SA, et al. Tracking of obesity-related behaviours from childhood to adulthood: a systematic review. Maturitas. 2011;70:266-284. 12. Talvia S, Räsänen L, Lagström H, et al. Longitudinal trends in consumption of vegetables and fruit in Finnish children in an atherosclerosis prevention study (STRIP). Eur J Clin Nutr. 2006;60:172-180. 13. Demark-Wahnefried W, Werner C, Clipp EC, et al. Survivors of childhood cancer and their guardians. Cancer. 2005;103:2171-2180. 14. Johnson MA, Javalkar K, van Tilburg M, et al. The relationship of transition readiness, self-efficacy, and adherence to preferred health learning method by youths with chronic conditions. J Pediatr Nurs. 2015;30:e83-e90. 15. Tonorezos ES, Henderson TO. Clinical guidelines for the care of childhood cancer survivors. Children (Basel). 2014;1:227-240. 16. Nathan PC, Greenberg ML, Ness KK, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008;26:4401-4409. 17. Kirchhoff AC, Montenegro RE, Warner EL, et al. Childhood cancer survivors’ primary care and follow-up experiences. Support Care Cancer. 2014;22:1629-1635. 18. Cherven B, Mertens A, Meacham LR, et al. Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic. J Pediatr Oncol Nurs. 2014;31:339-349. 19. Landier W, Chen Y, Namdar G, et al. Impact of tailored education on awareness of personal risk for therapy-related complications among childhood cancer survivors. J Clin Oncol. 2015;33:3887-3893. 20. Lakon CM, Pechmann C, Wang C, et al. Mapping engagement in Twitter-based support networks for adult smoking cessation. Am J Public Health. 2016;106:1374-1380. 21. Zhang J, Brackbill D, Yang S, Centola D. Efficacy and causal mechanism of an online social media intervention to increase physical activity: results of a randomized controlled trial. Prev Med Rep. 2015;2:651-657. 22. Centola D, van de Rijt A. Choosing your network: social preferences in an online health community. Soc Sci Med. 2015;125:19-31. 23. Duggan M, Lenhart A, Lampe C, Ellison NB. Parents and social media. Pew Research Center. www.pewinternet.org/2015/07/16/parents-and-social-media. 2015. 24. Vetsch J, Rueegg CS, Gianinazzi ME, et al. Information needs in parents of long-term childhood cancer survivors. Pediatr Blood Cancer. 2015;62:859-866. 25. Hamm MP, Shulhan J, Williams G, et al. A systematic review of the use and effectiveness of social media in child health. BMC Pediatr. 2014;14:138. 26. Hamm MP, Chisholm A, Shulhan J, et al. Social media use among patients and caregivers: a scoping review. BMJ Open. 2013;3:e002819. 27. Glenn AD. Using online health communication to manage chronic sorrow: mothers of children with rare diseases speak. J Pediatr Nurs. 2015;30:17-24. 28. Niela-Vilén H, Axelin A, Salanterä S, Melender HL. Internet-based peer support for parents: a systematic integrative review. Int J Nurs Stud. 2014;51:1524-1537. 29. Weiss JB, Berner ES, Johnson KB, et al. Recommendations for the design, implementation and evaluation of social support in online communities, networks, and groups. J Biomed Inform. 2013;46:970-976. 30. Centola D. The spread of behavior in an online social network experiment. Science. 2010;329:1194-1197. 31. Barclay KJ, Edling C, Rydgren J. Peer clustering of exercise and eating behaviours among young adults in Sweden: a cross-sectional study of egocentric network data. BMC Public Health. 2013;13:784. 32. Laranjo L, Arguel A, Neves AL, et al. The influence of social networking sites on health behavior change: a systematic review and meta-analysis. J Am Med Inform Assoc. 2015;22:243-256. 33. Turner-McGrievy G, Tate D. Tweets, apps, and pods: results of the 6-month Mobile Pounds Off Digitally (Mobile POD) randomized weight-loss intervention among adults. J Med Internet Res. 2011;13:e120. 34. Pechmann C, Pan L, Delucchi K, et al. Development of a Twitter-based intervention for smoking cessation that encourages high-quality social media interactions via automessages. J Med Internet Res. 2015;17:e50. 35. Quintero Johnson JM, Yilmaz G, Najarian K. Optimizing the presentation of mental health information in social media: the effects of health testimonials and platform on source perceptions, message processing, and health outcomes. Health Commun. 2017;32:1121-1132. 36. Pagoto SL, Schneider KL, Oleski J, et al. The adoption and spread of a core-strengthening exercise through an online social network. J Phys Act Health. 2014;11:648-653. 37. Sinnenberg L, Buttenheim AM, Padrez K, et al. Twitter as a tool for health research: a systematic review. Am J Public Health. 2017;107:143. 38. Baum LS. Internet parent support groups for primary caregivers of a child with special health care needs. Pediatr Nurs. 2004;30:381-388. 39. Coulson NS, Greenwood N. Families affected by childhood cancer: an analysis of the provision of social support within online support groups. Child Care Health Dev. 2012;38:870-877. 40. Greenzang KA, Cronin AM, Mack JW. Parental preparedness for late effects and long-term quality of life in survivors of childhood cancer. Cancer. 2016;122:2587-2594. 41. Bemis H, Yarboi J, Gerhardt CA, et al. Childhood cancer in context: sociodemographic factors, stress, and psychological distress among mothers and children. J Pediatr Psychol. 2015;40:733-743. 42. Long KA, Keeley L, Reiter-Purtill J, et al. Child-rearing in the context of childhood cancer: perspectives of parents and professionals. Pediatr Blood Cancer. 2014;61:326-332.

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