I am a registered nurse, master in health care and now I am a PhD candidate at School of Nurse of University of Sao Paulo. Since 2011 I am a volunteer at a Pain and Paediatric Palliative Care outpatient clinic from a public hospital.
Since my graduation I was introduced at the palliative care philosophy, and I started to search about it. My master degree research was about how children and adolescents in Palliative Care managing their pain.
Through the previously contact with children and adolescents from the outpatient clinic, many of then added me on social networks, and someday I was looking their posts and I started to getting curious in exploring this very common event among teenagers. So I started my current research on the use of the internet - and especially social networks; for adolescents in palliative care.
University of Sao Paulo, School of Nurse, Sao Paulo, Brazil
Background: While work with adolescent in Pediatric Palliative Care we need to notice their development (psychosocial and cultural). The adolescence it is characterized by social questions, where the adolescent need to belong to some group and their friends are very important. The technological growth changed the adolescent communication, nowadays, within the cyberspace, the adolescents can use the social networks and instant messaging platforms for communication with their friends, so they can keep connected constantly with, regardless of where they are or what are they doing and promote a sense of belonging to a group of friends.
Aim: The aim of this study was to explore the use and the content of social networks by adolescents in palliative care with life limiting conditions and life treatment.
Methods: This is a qualitative study that used the virtual ethnography and the content analysis. In a period of six months, six social networks profiles of adolescents aged 12 - 18 years old were observed. All of posts, photos and comments were decoded for content analysis. The six adolescents have some life limiting disease (as epidermolysis bulhosas, osteogenesis imperfecta and leukaemia).
Results: 41 children and families were reviewed. Clinical classification found was 2 SMA with respiratory distress (SMARD), 37 patients SMA type 1, 1 SMA type 2 and 1 SMA type 3. 36 patients have died. Median age at diagnose was 3 months (1 d-8m). Median delay between diagnose and first PPCD was 6,2 days (1-258d). Median follow up to date PPCU last for 53 days (1 d-1153 d). Most frequent onset symptom was hypotonia. One patient (2,5%) presented at first symptom severe respiratory failure. Median age at onset was 2,5 months. 37 patients (92,5%) received palliative care not only at the end of life. Advanced enteral nutrition was used in 33 patients. 76% received respiratory physiotherapy. 4 patients got invasive ventilation (2 endotracheal tube, 2 traqueostdmy). Night non invasive ventilation (NIV) was used in 8 patients (76%).100% suffer dyspnea.80°/0 got opioids, 15 needed benzodiazepines. At end of life 13 received benzodiazepines and opioids (85% subcutaneous). Median age at death was 6,6 months (22 days-172,5 months). Place of death was home in 67%. Bereavement follow up was performed in 28 patients with no pathologic bereavement process.
Conclusion: The social networks are an important tool to promote care for adolescents with life limiting disease, because the social network encourage the users for the communication with their friends and family, besides of being a space for the adolescents can share their experiences and learn with others. The health care professionals need to work with adolescents and families who are in Palliative Care using those tools to interact with them and promote more care and support.