A netnographic analysis of the online postings on the virtual communities by the parents of children with cancer

ABSTRACT A NETNOGRAPHIC ANALYSIS OF THE ONLINE POSTINGS ON THE VIRTUAL COMMUNITIES BY THE PARENTS OF CHILDREN WITH CANCER Objective: The purpose of this study was to identify how parents of children with cancer express themselves through online communities in terms of cancer, treatment, side effects, seeking support, feelings and thoughts, experiences, and to enable the original data to be used in order to improve the care quality in pediatric nursing. Methods: "Dancing with Cancer" and "The Hope Foundation for Children with Cancer(KAÇUV)", two forum pages on the Facebook where the parents of the children with cancer are also members of, and which have significant number of members, which are active with regular posts, and where we can find suitable content for the questions of our survey, are the samples of our survey. The survey was conducted between 2 September 2017 and 2 November 2017 using the netnography method, which was included in the qualitative research group. Throughout the research, it has been found that posters have repeatedly shared many physical, emotional, social, and environmental posts, and these shares have been classified within themselves. In the classification of the data, different expressions of the same subject (field title) were shown in a common place by subdividing them into subcodes. The qualitative data analysis program MAXQDA Analytic Pro 12 (release 12.3.1) was utilized while these subclassification systems were established. Results: Sub-classifications were made based on the field titles related to the survey questions and sub codes were created in the shared posts. Sub codes of the shared posts related to the disease are; "symptoms of the disease", "recurrent state and process", "accompanying diseases", "current news about the disease", "controls". Sub codes of the shared posts related to the medical treatment and the side effects are; "treatment", "transfer", "treatment rejection", "treatment at home", "complementary medicine", "vaccinations", "risks of treatment", "things worthy of notice", "post-operation status", "effectiveness of the treatment" "medicine", "position" "side effect", "physical side effect", "psychological side effect" and "mental side effect". Finally, subcodes of the shared posts related to others apart from the medical treatment are; "healthcare workers' expectation survey", "social service status", "genetic transition", "absence of child", "foreign treatment", "medical intervention attempts", "sleep regimen", "social activity", "infection", "psycho-social state, supportive expressions and emotional expressions", "nutrition", "normalization process", "wearing a mask", "prohibitions", "emphasizing the importance of blood cell transfer", "education", and "cleanliness". In the study, it was determined that the parents who had children with cancer had a tendency to participate in the primary care of their children and observed the treatment. It has been seen that parents are in solidarity with other parents in the same situation from the time of the diagnosis of cancer to the end of the treatment, and they have shared their knowledge and experience sincerely. When the questions in the posts were examined, it was observed that the information received from professional health workers was not sufficient and effective. It has been determined that the sensitivity that parents show in their posts related to "protection from infections" is the strongest in their knowledge sharing with other parents who are experiencing similar situations. In addition to what they can do with the cancerous child's nutrition, also questions about the status of going to school have been shared. Conclusion: There are statements in the parents' posts about receiving information about the medical definition and treatment of cancer patients, from their physicians. Nevertheless, it has been seen that they ask the questions that investigate the latest developments and innovations in the treatment in their group sharing, and they expect hopeful developments. From the examined posts of the parents, it has been determined that the child and the parents in the cancer treatment process are in need of support from professional healthcare workers and this need is not satisfied properly. It can be said that the pediatric nurse is in need of new approaches and quests to provide adequate and emotionally, intellectually and socially more effective support to children who receive cancer treatment and their families. Keywords: Child with cancer, Parents, Virtual communities, Netnographic study