“Najia” Story: A WhatsApp Support Group For Patients With Breast Cancer

Abstract

Social media is becoming an essential part of every aspect of life. Different media platforms exist, and each has different features; however, all platforms provide the opportunity to interact, engage, and share. The use of social platforms has extended to the medical field. Online support groups for several medical conditions have progressively evolved with the expansion of Internet use. A Cochrane review evaluated the effect of online breast cancer support groups on women’s emotional distress, uncertainty, anxiety, depression, and quality of life. It included online support groups in six trials that lasted 6 to 30 weeks and included eight to 15 members. Because the included trials were small and of low quality, the review did not find robust evidence to show whether participation in online support groups was beneficial for women with breast cancer. Also, they did not specify the specific online platform in the reviewed trials. An abstract from India reported a 14week program that was created to provide physical and psychological interventions by doctors, nurses, and social workers for groups consisting of six to 10 women with metastatic breast cancer on WhatsApp. The intervention was short-lived, but the authors concluded that such groups might replace physical meetings. Saudi Arabia is considered one of the countries with rapidly increasing social media engagement. Sixty-eight percent of the Saudi population consists of active media users with an average use of 3 hours daily. Interestingly, Saudi Arabia ranked first among Arab countries and second worldwide in the use of Snapchat and WhatsApp and Facebook had the top rates of social networking platforms use. From our experience, many patients in Saudi Arabia prefer to keep silent about their cancer diagnosis or perhaps prefer to maintain anonymity while participating in an online group. Although the desire to engage and share with similar patients and caregivers is present, such barriers may present difficulties and challenges, especially to women who grew up in a conservative culture. Moreover, a reliable native language platform is not easily found. On consultation and discussion with the author’s patients about online platforms, many expressed their desire to be part of a trusted group to connect, exchange experiences, and obtain psychosocial support. It is essential to know that real-time support groups do not exist in our country for the same reasons that hinder open social participation. After considering these barriers, in 2016 a WhatsApp support group for women with breast cancer was created. It is called Najia, which is Arabic for ‘‘A lady survivor’’ and has an artistically designed turtle as a group logo to symbolize the endurance and persistence of patients with breast cancer during their treatments and wish for posttreatment longevity. The group is moderated and supervised by the author, making sure it serves its intended purpose. It is a shared partnership with patients. Each one of the women is an administrator in addition to being a member and has the right to add or modify the goals of the group. The group has gained popularity over time. It was intended to connect and support the patients who the author manages. Unexpectedly, it has expanded to include women with breast cancer, both survivors and those undergoing active treatments at different hospitals and from different regions across Saudi Arabia. On invitation, other female oncology physicians joined the group and help supervise and provide trusted knowledge. The Najia WhatsApp group was initiated with 10 members. Currently, it is hosting more than 160 members and continues to grow. Many participants find the experience of participation empowering and educating according to their own statements. For instance, experience exchange between group members regarding the potential side effects of treatments and how to effectively deal with them form their perspectives. Such sharing gives reassurance to those starting the treatment journey that these treatments are bearable and tolerable. Challenging survivorship issues, such as sexual dysfunction and others, are