Caregiving Is a Marathon, Not a Road Race: Reenvisioning Caregiver Support Services in Gynecologic Oncology

Abstract

ObjectivesAs 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.MethodsOn 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.ResultsForty-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.ConclusionsExperts, 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.

Defining Essential Elements of Caregiver Support in Gynecologic Cancers Using the Modified Delphi Method

“…[6][7][8] Caregivers express intense feelings of wanting to provide care around the clock, yet they feel overwhelmed and burdened with their role. 9 Distress and unmet needs in caregivers of patients with ovarian cancer increases over the course of the disease. 10 Predictors of caregiver distress include poor social support, greater physical impairment of the patient, lower socioeconomic status, and younger age.…”

What Do Relatives of Turkish Women with Ovarian Cancer Share on Websites? : A Qualitative Research

“…One of the most common problems of the caregivers about social support systems was that they were not aware of these systems. Hand et al found that caregivers expressed their social support needs as calling a support group, contacting other caregivers, and receiving professional support [3].…”

“…The interactive internet-based communication system is an opportunity for caregivers in providing social support and skills training. Additionally, social media was brought to the agenda as supporting communities, which might match the caregivers [3]. For this reason, organizing a national forum will prevent relatives and patients from being misinformed and will contribute positively to the treatment process.…”

“…The use of technology is an important field in decreasing the caregiver burden in the healthcare model. Caregivers frequently use the Internet to learn information and support for cancer patient [3,10]. For this reason, healthcare providers can decrease the caregiver burden by informing the relatives about alternative and complementary applications.…”

“…Thanks to the developments in the treatment of ovarian cancer and increasing survival rates, changes are experienced in patient care outside the hospital, which increases the physical, emotional and social responsibilities of patients' relatives. The women who receive ovarian cancer diagnosis and their relatives experience difficulties during diagnosis and treatment [3]. It is possible that caregivers of women with gynaecologic cancer face the effects of the disease and treatment on their relationship, role, treatment monitoring, symptom management, personal care and emotional and financial support [4,5].…”