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.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.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.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.
Twenty-first century America is marked by deep and seemingly incommensurable divisions in terms of public policy solutions to our most intractable issues. Health policy challenges are not immune to these deep divisions, as the debate during and since the passage of the Affordable Care Act illustrates. Positions on key public policy issues are driven by largely implicit and unarticulated philosophical presuppositions that guide individuals’ notions of the nature of government, individuals’ moral obligations to each other, how society assesses quality of life, and what it means to be a community. If faculty in schools of nursing are to prepare graduate nurses to enter into these heated public policy debates, we must help students understand, identify, and articulate the philosophical presuppositions that undergird reasoning related to health policy issues. In this article, we present a working taxonomy that can help faculty members provide students with a basic understanding of core philosophical principles. We attempt to categorize all of western political philosophy into four distinct traditions or “impulses,” describing each of these four traditions in detail. We illustrate each tradition’s approach to political reasoning using a specific health policy case study. We conclude with some guidance about how to implement this content within a doctoral-level public policy curriculum.
Self-advocacy, defined as a cancer survivor's ability to get his or her needs met in the face of a challenge, is a critical skill for those facing the overwhelming disease and psychological burdens of cancer (Hagan & Donovan, 2013a, 2013b). Self-advocacy consists of three main skills: (a) making informed decisions, (b) finding strength through connection with others, and (c) communicating effectively with the oncology care team.
BACKGROUND Cancer survivors often experience declining engagement in digital health interventions (DHIs). However, predictors of engagement with provider-guided DHIs remain unclear. Nurse WRITE, an effective 8-week nurse-directed symptom management DHI, offers an opportunity to identify factors influencing engagement and enhance intervention efficacy evaluation. OBJECTIVE This study aims to (1) understand engagement phenomena (dimensions, influencing factors, and challenges) and (2) assess the relationship between engagement and patient symptom control in Nurse WRITE. METHODS The study included 68 women with recurrent ovarian cancer randomized to the Nurse WRITE arm of a 3-arm symptom management trial. We analyzed socio-affective and cognitive engagement through message board data and behavioral engagement using website usage data. Regression analyses examined patient characteristics, engagement, and symptom control perceptions. Through content analysis, we explored participant challenges and activities before disengagement. RESULTS Regarding influencing factors, higher education was associated with a 22% increased likelihood of engagement (p = 0.04). Education positively influenced cognitive and socio-affective engagement, including total count of cognitive classes (p = 0.01) and total word count (p = 0.03), with marginal associations for socio-affective classes (p = 0.07). Comorbidities tended to reduce both socio-affective (p = 0.06) and cognitive class counts (p = 0.07). Regarding behavioral engagement, education increased the odds of completing an extra symptom care plan by 23% (p = 0.02) and a plan review by 29% (p = 0.02). We observed a trend that higher symptom severity increased the odds of completing an additional plan review by 21% (p = 0.09). The most common engagement challenges included worsening health and treatment, busy family life, and website difficulties. Moderate and low engagers also experienced confusion about the intervention timeline and process. Among low engagers, 63% discontinued communication at specific intervention phases: introduction (33%), symptom representational assessment (21%), and goal setting and planning (21%). Regarding the relationship between engagement and symptom control at the end of the intervention, improved symptom control was associated with higher overall engagement (p = 0.02), a higher frequency of cognitive engagement classes (p = 0.02), average question completion percentage (p = 0.01), a higher frequency of socio-affective classes (p = 0.01) and total word count (p = 0.01), as well as a higher total count of completed symptom care plans (p = 0.04). CONCLUSIONS Participant education level significantly influenced Nurse WRITE engagement across socio-affective, cognitive, and behavioral dimensions. Comorbidity and symptom severity warrant further investigation. Future provider-guided DHIs should employ additional strategies to engage less well-educated participants, address challenges like health issues and family activities, and re-engage participants during critical phases. Our findings underscore the importance of meaningful engagement through socio-affective, cognitive, and behavioral dimensions in Nurse WRITE, informing future DHIs to aim for a balance of protocol adherence and flexibility to enhance engagement and improve outcomes.
