Social media use in adolescent and young adult (AYA) cancer survivors

Chou, Wen‐Ying Sylvia; Moskowitz, Michal C.

doi:10.1016/j.copsyc.2016.01.003

Cited by 22 publications

(13 citation statements)

References 27 publications

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“…This is consistent with previous studies where it has been shown that young people with cancer are active online and accessing a range of health care-related online resources. 11 , 14 , 15 For the first time we have shown distinct patterns of online use dependent on where young people are on their cancer timeline and that Internet searching is often driven by negative emotion. Factual information needs about cancer were generally well met by reputable cancer charity sites; however, young people had substantial unmet needs around peer support and holistic and practical information.…”

Section: Discussionmentioning

confidence: 93%

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Online information and support needs of young people with cancer: a participatory action research study

Lea¹,

Martins²,

Morgan³

et al. 2018

AHMT

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PurposeThe Internet is a fully integrated part of young people’s life and it is pivotal that online resources are developed to maximize the potential of the Internet to support those living with and beyond cancer. We sought to understand how young people with a cancer diagnosis use the Internet and to what extent information and support needs are met by existing online resources.Patients and methodsThis was a participatory action research study involving 21 young people participating in workshops and individual interviews. Participants aged 13–24 years were diagnosed with a range of cancers. Young people were on treatment or had completed treatment; some had experienced relapse. Workshops consisted of participatory methods including focus group discussions, interactive activities, and individual thought, encompassing online resources used; when, how and what they were searching for, whether resources were helpful and how they could be improved.ResultsYoung people reported using communication platforms, entertainment sites, social media, medical websites, charity websites, and search engines to find information and support. Different online use and needs were described throughout their cancer timeline and online use was generally driven by negative emotions. Seven factors influenced access and engagement: 1) where young people were on their cancer timeline; 2) external influencing factors, such as family and environments; 3) emotional drivers; 4) what young people search for online; 5) resources, websites, and digital platforms used by young people; 6) availability, accessibility, and assessment of online information and resources; 7) emotional responses to using online resources.ConclusionThe way young people access and engage with online resources is complex with multiple influencing factors including powerful emotional drivers and responses to Internet searching. There is a need to develop resources that support the holistic needs of young people and this should be done in collaboration with young people.

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Section: Discussionmentioning

confidence: 93%

“…Previous studies have recognized isolation as an emotion driving young people to search for peer support. 15 , 16 , 23 …”

Section: Discussionmentioning

confidence: 99%

Online information and support needs of young people with cancer: a participatory action research study

Lea¹,

Martins²,

Morgan³

et al. 2018

AHMT

View full text Add to dashboard Cite

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“…33 Evidence for use of social media as a tool to improve health communication, especially in the adolescent and young adult population, is emerging, but information from these platforms needs to be monitored for quality and reliability, while maintaining users' confidentiality and privacy. 34 Efforts to increase knowledge need to be directed not only at patients but also at health care providers, especially the hematologists/ oncologists who resume post-HCT care for a majority of patients, as shown in Figure 1. Additional curriculum items pertaining to transplantation survivorship during hematology/ oncology fellowship, continuing medical education activities (organized by professional societies) to increase knowledge about management of physical and psychosocial complications of HCT, and increased use of treatment summaries and survivorship care plans may help promote a shared-care model for post-HCT care.…”

Section: Survivorship Clinicsmentioning

confidence: 99%

Patient-centered care coordination in hematopoietic cell transplantation

Khera

Martín

Edsall³

et al. 2017

Blood Advances

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Hematopoietic cell transplantation (HCT) is an expensive, resource-intensive, and medically complicated modality for treatment of many hematologic disorders. A well-defined care coordination model through the continuum can help improve health care delivery for this high-cost, high-risk medical technology. In addition to the patients and their families, key stakeholders include not only the transplantation physicians and care teams (including subspecialists), but also hematologists/oncologists in private and academic-affiliated practices. Initial diagnosis and care, education regarding treatment options including HCT, timely referral to the transplantation center, and management of relapse and late medical or psychosocial complications after HCT are areas where the referring hematologists/ oncologists play a significant role. Payers and advocacy and community organizations are additional stakeholders in this complex care continuum. In this article, we describe a care coordination framework for patients treated with HCT within the context of coordination issues in care delivery and stakeholders involved. We outline the challenges in implementing such a model and describe a simplified approach at the level of the individual practice or center. This article also highlights ongoing efforts from physicians, medical directors, payer representatives, and patient advocates to help raise awareness of and develop access to adequate tools and resources for the oncology community to deliver well-coordinated care to patients treated with HCT. Lastly, we set the stage for policy changes around appropriate reimbursement to cover all aspects of care coordination and generate successful buy-in from all stakeholders.

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“…The literature regarding the use of online patient communities indicate a positive role of social media for AYAs coping and adjustment (Myrick et al, 2016;Perales et al, 2016), but these resources are frequently introduced after diagnosis and designed specifically to provide illness-specific support (Keim-Malpass et al, 2016;Perales et al, 2016). It is important that researchers also study platforms most familiar to AYAs and explore how ongoing use of these media may impact psychosocial development throughout cancer treatment (Chou & Moskowitz, 2016). As such, the purpose of this paper is to describe AYA perspectives on popular social media use throughout cancer treatment, using qualitative methodology as a means of directly assessing the personal experiences of AYAs with cancer.…”

mentioning

confidence: 99%

Perspectives on Social Media from Adolescents and Young Adults with Cancer

Daniels

Yang

Toohey

et al. 2021

J Pediatr Oncol Nurs

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Background: Adolescents and young adults (AYAs) with cancer use social media in unique ways throughout treatment. The purpose of this article is to describe the social media experiences of AYAs with cancer as a means of exploring the potential impact of social media on AYA psychosocial development after diagnosis and throughout cancer treatment. Methods: Seven AYAs treated for cancer, aged 15–20 years, completed a semi-structured interview regarding their social media preferences and habits. Each interview was transcribed verbatim and de-identified. Data were coded and themes were identified via latent thematic analysis. Results: Four themes emerged regarding social media experiences for AYAs with cancer: (1) changes in audience and feedback after diagnosis; (2) attitudes about body image and peer support; (3) control over personal, familial, and societal messages about illness; and (4) maintaining normalcy despite hospital stressors. Discussion: Social media appear especially useful for promoting social and identity development as AYAs undergo cancer treatment. Specifically, social media provide spaces to negotiate body image and sense of self, to manage peer relationships, to reclaim control and independence, and to maintain normalcy. Understanding these experiences will prepare healthcare providers and caregivers to assess ongoing psychosocial development and adjustment throughout cancer treatment.

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Social media use in adolescent and young adult (AYA) cancer survivors

Cited by 22 publications

References 27 publications

Online information and support needs of young people with cancer: a participatory action research study

Online information and support needs of young people with cancer: a participatory action research study

Patient-centered care coordination in hematopoietic cell transplantation

Perspectives on Social Media from Adolescents and Young Adults with Cancer

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