Skip to main content
SpringerLink
Log in

Understanding how social media imagery empowers caregivers: an analysis of microcephaly in Latin America

  • Original Article
  • Published:
Personal and Ubiquitous Computing Aims and scope Submit manuscript

Abstract

This paper reports the results of a 2-year-long imagery analysis about microcephaly in Latin America from the perspective of caregivers. The content analysis included 500 images associated with the hashtag microcefalia posted on Instagram in 2017 and 2018. Microcephaly affected more than 4,000 babies in Latin America in a few years, and the quick outbreak of the epidemic made Instagram an accessible tool for caregivers to express their thoughts, feelings, raise funds and awareness, exchange information about the condition, and find peer support. Most publications are managed by the mother of female patients seeking to celebrate milestones, exchange information, and find social support. The comprehensive analysis of the contents posted elicits the caregivers’ perspectives about microcephaly besides also clarifying how Instagram empowers them to raise awareness and communicate about the condition. Instagram demonstrated to be a low-cost support tool for caregivers. Also, it allows healthcare practitioners to disseminate medical information through online campaigns. By allowing users to share their individual perspectives and experiences through pictures, images, and videos, Instagram has become popular for users promptly seeking for information and social support.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Gulland A. (2016) Zika virus is a global public health emergency declares WHO

  2. Health Ministry (2018) Integrated monitoring about changes in the growth and development related to Zika virus infection and other etiological infections until the epidemiological week 48 of 2017. 49(3)

  3. LaCoursiere SP (2001) A theory of online social support. Adv Nurs Sci 24(1):60–77

    Article  Google Scholar 

  4. DeHoff BA, Staten LK, Rodgers RC, Denne SC (2016) 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. Journal of medical Internet research, 18(12)

  5. Dietrich C (2010) Online social support: an effective means of mediating stress. Inquiries Journal, 2(02)

  6. Ofli F, Aytar Y, Weber I, al Hammouri R, Torralba A (2017, April) Is saki# delicious?: The food perception gap on Instagram and its relation to health. In: Proceedings in the 26th International Conference on World Web, pp 509–518

  7. Mejova Y, Haddadi H, Noulas A, Weber I (2015, May) Food porn: Obesity patterns in culinary interactions. In: Proceedings of the 5th International Conference on Digital Health, pp 51–58

  8. Chung C-F, Agapie E, Schroeder J, Mishra S, Fogarty J, Munson SA (2017, May) When personal tracking becomes social: Examining the use of Instagram for healthy eating. In: Proceedings of the 2017 CHI Conference on human Factors in Computing Systems, pp 1674–1687

  9. Sharma SS, De Choudhury M (2015) Measuring and characterizing nutritional information of food and ingestion content in Instagram. In: Proceedings of the 24th International Conference on World Wide Web, pp 115–116

  10. Manikonda Lydia, Choudhury Munmun De (2017) Modeling and understanding visual attributes of mental health disclosures in social media pages 170–181

  11. Feuston JL, Piper AM (2019) Everyday experiences: small stories and mental illness on Instagram. In: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. ACM, p 265

  12. Andalibi N, Öztürk P, Forte A (2017) Sensitive self-disclosures, responses, and social support on Instagram: the case of# depression, pp 1485–1500

  13. Andalibi N, Ozturk P, Forte A (2015) Depression-related imagery on Instagram, pp 231–234

  14. Cheng Q, Li TMH, Kwok C-L, Zhu T, Yip PSF (2017) Assessing suicide risk and emotional distress in chinese social media: a text mining and machine learning study. Journal of medical Internet research, 19(7)

  15. Andalibi N (2017) Self-disclosure and response behaviors in socially stigmatized contexts on social media: the case of miscarriage. In: Proceedings of the 2017 CHI Conference Extended Abstracts on Human Factors in Computing Systems. ACM, pp 248–253

  16. Seltzer EK, Horst-Martz E, Lu M, Merchant RM (2017) Public sentiment and discourse about Zika virus on Instagram. Public Health 150:170–175

    Article  Google Scholar 

  17. Stefanidis A, Vraga E, Lamprianidis G, Radzikowski J, Delamater PL, Jacobsen KH, Pfoser D, Croitoru A, Crooks A (2017) Zika in Twitter: temporal variations of locations, actors, and concepts. JMIR Public Health and Surveillance, 3(2)

  18. Fung IC-H, Blankenship EB, Goff ME, Mullican LA, Chan KC, Saroha N, Duke CH, Eremeeva ME, Fu K-W, Tse ZTH (2017) Zika-virus-related photo sharing on Pinterest and Instagram. Disaster Medicine and Public Health Preparedness, pp 1–4

  19. Gina Merchant, Weibel N, Pina L, Griswold WG, Fowler JH, Ayala GX, Gallo LC, Hollan J, Patrick K (2017) Face-to-face and online networks: college students’ experiences in a weight-loss trial. Journal of Health Communication 22(1):75–83

    Article  Google Scholar 

  20. Phua J (2013) Participating in health issue-specific social networking sites to quit smoking: how does online social interconnectedness influence smoking cessation self-efficacy? J Commun 63(5):933–952

    Article  Google Scholar 

  21. Duke JC, Hansen H, Kim AE, Curry L, Allen J (2014) The use of social media by state tobacco control programs to promote smoking cessation: a cross-sectional study. Journal of medical Internet research, 16(7)

  22. Garimella VRK, Alfayad A, Weber I (2016) Social media image analysis for public health, pp 5543–5547

  23. Pew report - social media and parenting. http://www.pewinternet.org/2015/07/16/parents-and-social-media/. Accessed: 2018-01-15

  24. Carrotte ER, Vella AM, Lim MSC (2015) Predictors of “liking” three types of health and fitness-related content on social media: a cross-sectional study. Journal of medical Internet research, 17(8)

  25. Lenoir P, Moulahi B, Azé J, Bringay S, Mercier G, Carbonnel F (2017) Raising awareness about cervical cancer using Twitter: content analysis of the 2015 #SmearForSmear campaign. Journal of medical Internet research, 19(10)

  26. Nelson KM, Ramirez JJ, Carey MP (2017) Developing online recruitment and retention methods for HIV prevention research among adolescent males who are interested in sex with males: interviews with adolescent males. Journal of medical Internet research, 19(12)

  27. Wärnestål P, Svedberg P, Lindberg S, Nygren JM (2017) Effects of using child personas in the development of a digital peer support service for childhood cancer survivors. Journal of Medical Internet Research, 19(5)

  28. Carrotte ER, Prichard I, Lim MSC (2017) “Fitspiration” on social media: a content analysis of gendered images. Journal of Medical Internet Research 19(3):e95

    Article  Google Scholar 

  29. Maged N, Boulos K, Giustini DM, Wheeler S (2016) Instagram and WhatsApp in health and healthcare: an overview. Future Internet 8(3):37

    Article  Google Scholar 

  30. Chung C-F, Agapie E, Schroeder J, Mishra S, Fogarty J, Munson SA (2017) When personal tracking becomes social: examining the use of Instagram for healthy eating pp 1674–1687

  31. Motti VG, Kalantari N (2019) Understanding how social media imagery empowers caregivers: an analysis of microcephaly in Latin America. In: 13th EAI International Conference on Pervasive Computing Technologies for Healthcare-Demos and Posters. European alliance for innovation (EAI)

  32. Beykikhoshk A, Arandjelović O, Phung D, Venkatesh S, Caelli T (2014) Data-mining Twitter and the autism spectrum disorder: a pilot study, pp 349–356

  33. Taylor SE (2011) Social support: a review. The handbook of health psychology 189:214

    Google Scholar 

  34. Rains SA, Young V (2009) A meta-analysis of research on formal computer-mediated support groups: examining group characteristics and health outcomes. Human Communication Research 35(3):309–336

    Article  Google Scholar 

  35. Timimi FK (2012) Medicine, morality and health care social media. BMC Medicine 10(1):83

    Article  Google Scholar 

  36. Ammari T, Schoenebeck S (2015) Networked empowerment on Facebook groups for parents of children with special needs pages 2805–2814

  37. Bromley J, Hare DJ, Davison K, Emerson E (2004) Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services. Autism 8(4):409–423

    Article  Google Scholar 

  38. Cole L, Kharwa Y, Khumalo N, Reinke JS, Karrim SBS (2017) Caregivers of school-aged children with autism: social media as a source of support. J Child Fam Stud 26(12):3464– 3475

    Article  Google Scholar 

  39. Cummins A (2001) The subjective well-being of people caring for a family member with a severe disability at home: a review. J Intellect Dev Disabil 26(1):83–100

    Article  Google Scholar 

  40. Niela-Vilén H, Axelin A, Salanterä S, Melender H (2014) Internet-based peer support for parents: a systematic integrative review. International journal of nursing studies 51(11):1524–1537

    Article  Google Scholar 

  41. Ammari T, Schoenebeck SY, Morris MR (2014) Accessing social support and overcoming judgment on social media among parents of children with special needs. In: Eighth International AAAI Conference on Weblogs and Social Media

  42. Instagram social media mobile app. https://www.instagram.com/. Accessed: 2018-01-15

  43. Instagram users in Latin America skew female. https://www.emarketer.com/content/instagram-users-in-latin-america-skew-female. Accessed: 2018-01-15

  44. Instagram user base in Latin America. https://www.emarketer.com/content/instagram-users-in-latin-america-skew-female. Accessed: 2018-01-15

  45. Instagram omnicore. https://www.omnicoreagency.com/instagram-statistics. Accessed: 2018-01-15

  46. Keyhole: Hashtag tracking for Twitter, Instagram and Facebook. http://keyhole.co/. Accessed: 2018-01-15

  47. James W, Pennebaker MEF, Booth RJ (2001) Linguistic inquiry and word count: Liwc 2001. Mahway: Lawrence Erlbaum Associates 71(2001):2001

    Google Scholar 

  48. Gruzd A (2016) Netlytic: software for automated text and social network analysis. Computer software, Available from: http://Netlytic.org. Accessed 25 May 2017)

  49. Bazeley P, Jackson K (2013) Qualitative data analysis with NVivo. Sage Publications Limited

  50. Sinclair S, Rockwell G, et al. (2016) Voyant tools. http://voyant-tools.org/. September 5, 2016

  51. de Oliveira WK, Cortez-Escalante J, De Oliveira WTGH, do Carmo GMI, Henriques CMP, Coelho GE, de França GVA (2016) Increase in reported prevalence of microcephaly in infants born to women living in areas with confirmed Zika virus transmission during the first trimester of pregnancy—Brazil, 2015. Morb Mortal Wkly Rep 65(9):242–247

    Article  Google Scholar 

  52. Countries with most Instagram users. https://www.statista.com/statistics/578364/countries-with-most-instagram-users/ Accessed 2018-01-15

  53. Cuevas R (2012) Cuevas medek exercise. Chile: Cuevas Medek Exercise International Center

Download references

Acknowledgments

We acknowledge the collaboration of Prof. Giovanni Lovisi and Maria Eduarda Lannes for initial discussions on microcephaly and the epidemics of congenital Zika syndrome. Special thanks to our the caregiver who kindly authorized the re-publication of the actual images.

Author information

Authors and Affiliations

  1. Department of Information Sciences and Technology, Volgenau School Engineering, George Mason University, Fairfax, VA, 22030, USA

    Vivian Genaro Motti & Niloofar Kalantari

  2. Department of Computer Science, Federal University of São Carlos Brazil, São Carlos, Brazil

    Vânia Neris

Authors
  1. Vivian Genaro Motti
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Niloofar Kalantari
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Vânia Neris
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Vivian Genaro Motti.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Motti, V.G., Kalantari, N. & Neris, V. Understanding how social media imagery empowers caregivers: an analysis of microcephaly in Latin America. Pers Ubiquit Comput 25, 321–336 (2021). https://doi.org/10.1007/s00779-020-01418-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00779-020-01418-y

Keywords

Search

Navigation