Elizabeth Donovan1, Sarah R Martin2, Laura C Seidman3, Lonnie K Zeltzer2,4, Tara M Cousineau5,6, Laura A Payne3,7, Marla Knoll8, Margorie Weiman2, Noah C Federman2,4,9. 1. Department of Psychology, Simmons University, Boston, Massachusetts, USA. 2. Department of Pediatrics, David Geffen School of Medicine at UCLA, Los Angeles, California, USA. 3. McLean Hospital, Belmont, Massachusetts, USA. 4. UCLA's Jonsson Comprehensive Cancer Center, Los Angeles, California, USA. 5. Harvard University Counseling and Mental Health Services, Cambridge, Massachusetts, USA. 6. Center for Mindfulness and Compassion, Cambridge Health Alliance, Cambridge, Massachusetts, USA. 7. Harvard Medical School, Boston, Massachusetts, USA. 8. Department of Care Coordination, Mattel Children's Hospital, UCLA Health, Los Angeles, California, USA. 9. Department of Orthopaedics, David Geffen School of Medicine at UCLA, Los Angeles, California, USA.
Abstract
Purpose: The aims of the current study were to better understand, from the perspective of adolescents and young adults (AYAs) with sarcoma, parents, and providers, the friendship support needs of AYAs with bone and soft tissue sarcoma and the role of social media in facilitating social support for AYAs with sarcoma. Methods: Semistructured interviews were conducted with 21 participants. AYA (n = 10) ranged in age from 14 to 23 years (mean 19.3, standard deviation 3.4 years; 50% female). All AYAs reported a current or past diagnosis of sarcoma, except for one patient who had another cancer diagnosis but was receiving treatment through the sarcoma clinic. Five parents of the adolescent participants were interviewed, as well as six health care providers. Data analysis was conducted using theory-driven immersion/crystallization, incorporating the Resilience in Illness Model as a framework to guide interpretation of the data. Results: Four main themes associated with social support from friends and social media were identified: (1) Social media provides a way to feel normal and connected to friends; (2) Social media accentuates the frustration of being left behind; (3) Social media facilitates the need to be understood by peers who have experienced sarcoma, and (4) Social media can lead to despair, and also provide hope for the future. Conclusions: Connecting with peers through social media can play an important role in providing support for AYAs with sarcoma, but it may also amplify feelings of frustration and anxiety. Future work is needed to determine intervention components that can maximize the benefits of social media for social support of AYAs with sarcoma. Clinical Trial Registration number: NCT03130751.
Purpose: The aims of the current study were to better understand, from the perspective of adolescents and young adults (AYAs) with sarcoma, parents, and providers, the friendship support needs of AYAs with bone and soft tissue sarcoma and the role of social media in facilitating social support for AYAs with sarcoma. Methods: Semistructured interviews were conducted with 21 participants. AYA (n = 10) ranged in age from 14 to 23 years (mean 19.3, standard deviation 3.4 years; 50% female). All AYAs reported a current or past diagnosis of sarcoma, except for one patient who had another cancer diagnosis but was receiving treatment through the sarcoma clinic. Five parents of the adolescent participants were interviewed, as well as six health care providers. Data analysis was conducted using theory-driven immersion/crystallization, incorporating the Resilience in Illness Model as a framework to guide interpretation of the data. Results: Four main themes associated with social support from friends and social media were identified: (1) Social media provides a way to feel normal and connected to friends; (2) Social media accentuates the frustration of being left behind; (3) Social media facilitates the need to be understood by peers who have experienced sarcoma, and (4) Social media can lead to despair, and also provide hope for the future. Conclusions: Connecting with peers through social media can play an important role in providing support for AYAs with sarcoma, but it may also amplify feelings of frustration and anxiety. Future work is needed to determine intervention components that can maximize the benefits of social media for social support of AYAs with sarcoma. Clinical Trial Registration number: NCT03130751.
Entities:
Keywords:
adolescent; cancer; sarcoma; social media; social support; young adult
Authors: Sharyl J Nass; Lynda K Beaupin; Wendy Demark-Wahnefried; Karen Fasciano; Patricia A Ganz; Brandon Hayes-Lattin; Melissa M Hudson; Brenda Nevidjon; Kevin C Oeffinger; Ruth Rechis; Lisa C Richardson; Nita L Seibel; Ashley W Smith Journal: Oncologist Date: 2015-01-07
Authors: Chandylen L Nightingale; Gwendolyn P Quinn; Elizabeth A Shenkman; Barbara A Curbow; Bradley J Zebrack; Kevin R Krull; I-Chan Huang Journal: J Adolesc Young Adult Oncol Date: 2011-09 Impact factor: 2.223
Authors: Elizabeth Donovan; Sarah R Martin; Laura C Seidman; Lonnie K Zeltzer; Tara M Cousineau; Laura A Payne; Meredith Trant; Marjorie Weiman; Marla Knoll; Noah C Federman Journal: JMIR Mhealth Uhealth Date: 2019-03-18 Impact factor: 4.773
Authors: Michael Rost; Vittoria Espeli; Marc Ansari; Nicolas von der Weid; Bernice S Elger; Eva De Clercq Journal: Health Policy Technol Date: 2022-03-04 Impact factor: 5.211