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Conversations of parents with children diagnosed with cancer: Tapping into social media

Sameenby Sameen Rehman

The ravaging realities of childhood cancer silently crept into our family some time during the first year of our daughter Samara’s life. She was born completely healthy. She was meeting all her growth milestones. She was perfect. Then our world came crashing down when exactly 19 days after her first birthday Samara was diagnosed with Neuroblastoma – a huge mass in her tiny tummy with a fatal prognosis.

Despite the sincere and compassionate effort of Samara’s medical team trying to keep us informed and engaged throughout every decision following her diagnosis, the shock, grief, anxiety, uncertainty, confusion, and excruciating pain of watching our beautiful daughter lying in a coma on a hospital bed with countless tubes and machines helping her stay alive left us indescribably numb. A numbness that can only be understood by other parents and family members who have watched their child battle odds that are stacked higher and higher against them with each breath.

During these unfathomably difficult times, an effective exchange of information between parents and medical staff as well as support workers is a critical part of care for a child. The chaotic overload of medical information that is shared with unprepared and numb families, like ours, following a child’s diagnosis of cancer can be quite overwhelming. Parents, like us, have described the process of acquiring and understanding information about their child’s cancer experience as being similar to learning a new language [1].  Being able to talk to other parents in similar situations, however, gave us some comfort and support – and most importantly, helped us hold on to hope. We were not willing or able to leave Samara at the PICU to attend in-person support groups. Instead, we opted to reach out to other parents using online sources that could be easily accessible from our phones.

In recent times, social media platforms on the internet have been adopted as an effective way to create informal support networks during severe illnesses like cancer. If a family lives far from an in-person support group, or if a child happens to be hospitalized and the parents do not want to leave the child to attend a support group – social media platforms provide an effective alternative in a safe and welcoming online environment. Social media platforms can also be beneficial for parents who may not want to attend a face-to-face support group. While only health care professionals can provide medical information about the specific type of cancer and specific health circumstances, parents of a child diagnosed with cancer can use social networking tools to share and find information about treatment options and side effects as experienced by their child as well as information about available clinical trials. Parents may also choose to provide updates to friends and family, and post pictures or video of the child, as appropriate [2]. In an article for CURE Magazine providing advice to parents with children diagnosed with cancer, Sue Mead, Mom of a brave cancer warrior, highlights the role of social media in reaching out for support following a child’s diagnosis of cancer. She cautions parents about the sad stories and tough moments that may arise from meeting other parents online. Some children are very sick and some may pass away – but at the end of the day it is a shared journey and every child’s story will provide wisdom, says Sue [3].

There are many social media websites that are used by parents of children diagnosed with cancer. Some require users to log in to a closed environment only available to registered members. Some platforms are open to anyone willing to participate. Among some of the platforms used by parents are Facebook, Twitter, CarePages, CaringBridge, online parenting communities like BabyCenter, and blogs. A recent study on blogs maintained by parents of children diagnosed with cancer, for example, revealed that the interaction between the author-parent and the reader influenced each other and highlighted the reader’s effort to support and affirm the blogger throughout the child’s cancer journey. This study highlights the need for further research about the usage of social media by parents of children diagnosed with cancer. The study also revealed that health care providers and support workers can obtain a better understanding of the day-to-day experiences of parents with children living with cancer, and can contribute towards improving family satisfaction with patient care as well as quality of life concerns [4].

Although the effort to treat and cure cancer continues to focus primarily (and rightfully) on finding means to treat physical symptoms, it is just as important for health care providers to take into account the emotional and social condition of family members when an individual gets diagnosed with cancer [5]. While social media may not be the chosen avenue of support for every family caring for a child with cancer, the increased use and popularity of social media in the day-to-day lives of parents suggest the need to further investigate the psychosocial role played by online social networks following a child’s diagnosis of cancer. The 2013 Social Mom Report published as a part of the BabyCenter 21st Century Mom Insight Series, is an example of an in-depth view of how Social Media is increasingly deeply rooted within the overall experience of parenting [6]. This report demonstrates the value in using social media platforms like BabyCenter communities to gain extremely valuable insight about the behaviours and needs of parents. Focusing directly on the social media usage by parents of children diagnosed with cancer can similarly provide extremely valuable access to a large number of parents and families caring for a child with cancer. Access to this virtual community through social media platforms can certainly provide a candid insight into the lives and social conditions of parents caring for children with cancer. The strengths and perspectives provided by parents in these candid environments can potentially play a key role in enhancing the patient-provider relationship as well as overall healthcare and social services for children diagnosed with cancer and their parents.

Social media continued to be our lifeline during Samara’s brief but brave journey with cancer. The tightly knit childhood cancer community, with its unwilling participants, continues to be a crucial network of support and knowledge for parents like us. Tapping into the vast online presence of this community can certainly provide medical and support workers with an insight into the perspectives, strengths and motivations of parents living through similar life circumstances following a child’s diagnosis with cancer.

 

 


 

References:

[1] Ringnér, A., Jansson, L., & Graneheim, U. (2011). Parental experiences of information within pediatric oncology. Journal of Pediatric Oncology Nursing, 28(4), 244-251. doi: 10.1177/1043454211409587

[2] Cancer.net. (2012, May 8). Online communities for support. Retrieved September 30, 2012 from http://www.cancer.net/all-about-cancer/cancernet-feature-articles/quality-life/online-communities-support

[3] Mead, S. (2012, September 19). Surviving childhood cancer: A mother’s advice. Retrieved June 19, 2013 from http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/guest/2012/9/19/Surviving-childhood-cancer-A-mothers-advice

[4] Heilferty, C. M. (2009). Toward a theory of online communication in illness: Concept analysis of illness blogs. Journal of Advanced Nursing, 65(7), 1539-1547. doi: 10.1111/j.1365-2648.2009.04996.x

[5] Institute of Medicine. (2007). Cancer Care for the Whole Patient. Retrieved September 30, 2012 from http://www.iom.edu/Reports/2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx.

[6] BabyCenter. (2013). 2013 Social Mom Report. Retrieved June 19, 2013 from http://www.babycentersolutions.com/docs/BabyCenter_2013_Social_Media_Marketers_Handbook_US.pdf


 

Sameen Rehman 

On January 19th, 2012 Sameen’s first born baby girl Samara was diagnosed with Neuroblastoma. Samara spent 31 long nights at the PICU at Sick Kids Hospital in Toronto, and earned her angel wings on February 21st, 2012. She was 13 months and 20 days old. As a graduate student at the Faculty of Information of the University of Toronto, Sameen studies the use of social media by parents of children diagnosed with cancer. Sameen is committed to remaining closely involved with the childhood cancer community and is inspired on a daily basis by the memory of her daughter’s brief time on earth – and by the countless stories of the brave little cancer warriors that she had the honor of meeting online as well as in person. She lives in Oakville, Ontario with her husband of 7 years and Samara’s newborn sister Siara.

 

 

 

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One Response to Conversations of parents with children diagnosed with cancer: Tapping into social media

  1. Pingback: New EI Benefit Now in Effect for Parents of Critically Ill Children | Cancer Knowledge Network

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