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Caregiving Is a Marathon, Not a Road Race: Reenvisioning Caregiver Support Services in Gynecologic Oncology
  1. Lauren C. Hand, MD*,
  2. Teresa H. Thomas, PhD, RN,
  3. Sarah Belcher, RN,
  4. Grace Campbell, PhD, RN, MSW,
  5. Young Ji Lee, PhD, RN,
  6. Mary Roberge, RN,
  7. Christina Lizaso, MSO§,
  8. Dorinda Sparacio, MS§ and
  9. Heidi S. Donovan, PhD, RN*,
  1. *Division of Gynecologic Oncology, Department of Obstetrics, Gynecology, and Reproductive Sciences, Magee-Womens Hospital of University of Pittsburgh Medical Center;
  2. School of Nursing, University of Pittsburgh, Pittsburgh, PA;
  3. Department of Biomedical Informatics, School of Medicine, University of Pittsburgh, Pittsburgh, PA;
  4. §GYNecologic Cancer Social Media Highstown, NJ.
  1. Address correspondence and reprint requests to Lauren C. Hand, MD, Division of Gynecologic Oncology, Department of Obstetrics, Gynecology, and Reproductive Sciences, Magee-Womens Hospital of University of Pittsburgh Medical Center, 300 Halket St, Suite 1750 Pittsburgh, PA 15213. E-mail: handlc{at}


Objectives As gynecologic cancer care shifts to the outpatient setting, caregivers are instrumental in helping patients navigate the demands of the disease and treatment. Through social media, we aimed to understand the needs of caregivers of patients with gynecologic cancers and support services necessary to meet these needs.

Methods On January 10, 2018, a monthly Twitter discussion session was hosted by the GYNecologic Cancer Social Media community (handle @GYNCSM) using the hashtag #GYNCSM. Five topics regarding caregiver needs and support were discussed. Basic descriptive statistics, including means and frequencies of tweets, and a content analysis of the tweets were performed.

Results Forty-six participants posted a total of 471 tweets, with 1.725 million impressions. Four main themes of caregiver needs emerged, including accepting help from others, a need to care for themselves as caregivers, increased access to information and resources, and a need for the health care team to communicate with caregivers. Themes relating to barriers to obtaining support services included practical barriers, a lack of awareness, negative emotions, and a need to do it all themselves. Participants suggested that caregiver support programs include convenient resources, caregiver peer support programs, support for the “work” of caregiving, and support to improve the emotional and physical health of the caregiver.

Conclusions Experts, patients, and caregivers effectively engaged in social media to identify a wide range of needs of caregivers of women with gynecologic cancers. Further research is needed to identify specific support services that could meet the priority needs of a broader network of caregivers.

  • Caregiver support
  • Caregiving
  • Gynecologic oncology

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  • The authors declare no conflicts of interest.