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Social support enactments on social media during the first 6 months of young adult cancer caregiving

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Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Purpose

To explore how family/friend young adult cancer caregivers (YACC) used social media for social support in a cross-sectional retrospective mixed-methods study.

Methods

Eligible YACC were recruited online and in-person from September 2017 to June 2018, were 18–39 years, used social media weekly, and cared for an adult cancer patient diagnosed 6 months–5 years prior (N = 34). Social media posts were randomly sampled, and content analyzed for five types of social support (emotional, informational, validation, companionship, instrumental). Generalized linear models were fit to estimate changes in the prevalence of social support in posts over the 6-month period following diagnosis.

Results

The investigators analyzed N = 2090 social media posts, 26.9% made by YACC, and 73.1% by followers; 36.8% were cancer-related. The most common type of social support for YACC on social media was emotional (63.3%), followed by informational (27.7%), validation (15.3%), companionship (5.7%), and instrumental (1.3%). When controlling for platform (e.g., Instagram), the odds of posts containing emotional support decreased significantly over the first 6 months of caregiving (adjusted odds ratio [aOR]: 0.90, 95%CI 0.85–0.94), while informational (aOR: 1.15, 95%CI 1.09–1.21) and companionship (aOR: 1.12, 95%CI 1.02–1.24) support increased.

Conclusions

YACC and their followers share emotional and informational support on social media. Next steps should determine how social media may improve (e.g., social support) or hinder (e.g., misinformation) cancer caregiving throughout survivorship.

Implications for Cancer Survivors

Caregivers and patients should be aware of possible fluctuations in social media support after diagnosis and the utility of using social media for different types of social support.

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Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The Huntsman-Intermountain Adolescent and Young Adult Cancer Care Program’s patient navigators, Sara Salmon and Tomoko Tsukamoto, were incredibly supportive for this project. This work was also supported by the Huntsman Cancer Institute’s Cancer Learning Center, the Wellness and Integrative Health Center, and the Communications and Social Media Outreach team. Thank you to Ms. Samantha Pannier and Ms. Sara Shaw who supported participant recruitment at Huntsman Cancer Institute, and the caregiver and cancer advocacy groups who shared the recruitment materials on social media. This work would not have been possible without the valuable time contributed by caregivers in the study.

Funding

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under Award Numbers F31CA221000 and T32CA078447. Additional support was provided by P30CA042014 from the National Cancer Institute (PI: Mary Beckerle). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The work was also made possible by generous support from the Jonas Foundation for Nursing and Veteran’s Healthcare, the Huntsman Cancer Institute Cancer Control and Population Sciences Department, and the Huntsman Intermountain Adolescent and Young Adult Oncology Program. This study used REDCap, which is supported by 8UL1TR000105 (formerly UL1RR025764) NCATS/NIH.

Author information

Author notes

  1. Echo L. Warner

    Present address: University of Arizona Cancer Center, Tucson, AZ, USA

  2. Echo L. Warner

    Present address: University of Arizona College of Nursing, Tucson, AZ, USA

  3. Andrew Wilson

    Present address: Parexel International, Durham, NC, USA

Authors and Affiliations

  1. Cancer Control and Population Sciences Research Program, Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT, 84112, USA

    Echo L. Warner, Anne C. Kirchhoff, Austin R. Waters, Taylor Nelson & Lee Ellington

  2. College of Nursing, University of Utah, Salt Lake City, UT, USA

    Echo L. Warner, Andrew Wilson, Kristin G. Cloyes & Lee Ellington

  3. Department of Pediatrics, University of Utah, Salt Lake City, UT, USA

    Anne C. Kirchhoff

  4. Department of Communication, University of Utah, Salt Lake City, UT, USA

    Ye Sun

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  1. Echo L. Warner
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  8. Lee Ellington
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Echo L. Warner, Andrew Wilson, Austin R. Waters, and Taylor Nelson. The first draft of the manuscript was written by Echo L. Warner and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Echo L. Warner.

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Ethics approval

This study was approved by the University of Utah Institutional Review Board and was performed in accordance with ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments.

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The authors declare no competing interests.

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Warner, E.L., Kirchhoff, A.C., Wilson, A. et al. Social support enactments on social media during the first 6 months of young adult cancer caregiving. J Cancer Surviv 16, 61–72 (2022). https://doi.org/10.1007/s11764-021-01004-y

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