Virtual psychosocial services for the adult population in a large community oncology practice.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 283-283
Author(s):  
Stephanie Broadnax Broussard ◽  
Emily Pearcy ◽  
Vanessa Dunham ◽  
Kendra Burke ◽  
Jackeline Castillo ◽  
...  
Keyword(s):  
Social Work ◽  
Support Groups ◽  
Support Group ◽  
Adult Population ◽  
Psychosocial Services ◽  
Patients With Cancer ◽  
Cancer Support ◽  
Patient Reported ◽  
Virtual Counseling ◽  
Virtual Support

283 Background: Psychological and social supports are essential to address the emotional impact of cancer. The Covid-19 pandemic exacerbated emotional distress for patients with cancer and impeded many of the traditional service delivery models for supportive services. An increase in patient reported distress from routine distress screenings highlighted the need to transition to virtual Social Work (SW) services. Methods: Patients were referred to virtual SW services three ways: self-referral, distress screenings, and clinic staff. A virtual support group registration site was created to increase awareness which was promoted by our marketing team. Three different SW facilitated virtual support groups were offered: Stronger Together, Empower Your Recovery: A Program for Healing and Growth for Living Beyond Cancer©*, and Paving the Way for Your Journey: A Cancer Support Program (PTW). Of note, the PTW six-week psychoeducation support group curriculum was developed by six employed SW facilitators. Groups included closed and open formats with scheduled frequencies. In addition to virtual support groups, standard social support including, psychosocial assessments, Advance Care Planning, virtual counseling visits were offered virtually with patients via the VSee telemedicine platform. Results: Social Work referrals increased by 154% from 949 in 2019 to 2413 in 2020 due to positive distress screening. From March 2020-21, 14,948 patients received SW services which was an increase from 10,208 seen from March 2019-20. Of these, 372 received virtual psychosocial telemedicine services from March 2020-21. There were 4092 unique webpage views to the support group information and registration website. Total number of all virtual registrants in the 3 groups from May 2020 to February 2021 was 326. Conclusions: The COVID19 pandemic required us to use, technology and virtual tools to ensure continued patient access to psychosocial services and expand access to support groups, in addition to the in-person SW services that remained. Limitations of virtual support groups and telemedicine included lack of internet access felt to be from socioeconomic barriers. Further research is needed to evaluate the benefits of providing structured psychoeducational virtual support groups to patients with cancer. Virtual counseling and support groups may continue to benefit patients with cancer.

scholarly journals From Diagnosis to Survivorship: Using Cancer Support Group as an Advocacy and Support Tool for Cancer Care

2018 ◽  
Vol 4 (Supplement 3) ◽  
pp. 32s-32s
Author(s):  
Gloria M. Orji ◽  
Runcie C.W. Chidebe ◽  
Chuks Igbokwe ◽  
Khadijat Banwo-Fatai ◽  
Swatkasa Gimba ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Cancer Care ◽  
Patients With Cancer ◽  
Cancer Support ◽  
Cancer Support Groups ◽  
Cancer Support Group

Purpose Cancer diagnosis comes with many challenges. Diagnosis is a huge burden to the patient, family, and community that subjects them to financial crisis, emotional distress, a dearth of self-esteem, and physiologic deformations. From a patient’s perspective, the treatment of cancer is complex and complicated with a weak health care system, attitude of health care workers, lack of insurance, lack of trust in orthodox medicine, and stigmatization. Patients with cancer are constantly seeking solace, people to listen to them, and people who understand their state of mind and can be a source of inspiration. Studies have shown that peer cancer support groups result in psychological benefit and improve relationships. The 2016 World Cancer Congress patient’s pavilion inspired us to start cancer support group for patients with cancers, survivors, and caregivers, known as the Abuja Breast Cancer Support Group, through the Union for International Cancer Control SPARC Metastatic Breast Cancer Challenge project. The cancer support group was primarily founded for only patients with breast cancer, survivors, caregivers, and for peer support. As of today the group has transitioned from being a patient group to also being an advocacy group with a number of activities and programs that are aimed at guiding all patients with cancer from diagnosis to survivorship. Methods This study reviewed the 1 year activities of the Abuja Breast Cancer Support Group and surveyed the impact of peer support on the 36 members of the group using a mixed-methods approach. Results Cancer support groups have the potential to revolutionize cancer care in sub-Saharan Africa, as we have seen with HIV/AIDs support groups. Use of technological tools is helpful to build connectedness. Conclusion There was an improvement in the psychological states of patients as well as in their physiologic understanding of their diagnosis by meeting together, networking, and interacting through a WhatsApp group. Our qualitative findings also indicate that patients with cancer need platforms through which to speak out, to advocate, and to change the course of cancer care if provided with the necessary training and support. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.

Patient-reported barriers to online meetings: The case of a myeloma support group in western Kenya in the era of COVID-19.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24036-e24036
Author(s):  
Mercy Oduor ◽  
Kelvin Manyega ◽  
Therese Lotodo ◽  
Austin Okuku ◽  
Diana Namaemba ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Support Groups ◽  
Support Group ◽  
Cost Savings ◽  
Peer To Peer ◽  
The Internet ◽  
Online Support Group ◽  
Patient Support Group ◽  
Patient Reported ◽  
Group Meetings

e24036 Background: Multiple myeloma is a chronic progressive disease that calls for extended survivorship support post-diagnosis. Pre- COVID-19, the AMPATH Multiple Myeloma Program had created support groups for myeloma survivors and their caregivers that regularly met for health education, emotional support, and social opportunities. With the enforcement COVID-19 prevention and control protocols physical support group meetings became impossible. The program shifted to the online platform to sustain peer to peer support for myeloma patients and caregivers. We aim to describe challenges faced with online patient support group meetings as this has not been well documented in a resource-constrained setting. Methods: Myeloma patients and caregivers at Moi Teaching and Referral Hospital were contacted and a meeting date and time agreed. Participants were briefed on how to download and operate the zoom application in preparation for online meetings. A meeting link was shared with the expected attendees and a reminder sent two days before a meeting. Support group meetings were held for different groups among them myeloma survivors and caregivers. The meeting sessions were led by healthcare professionals – hematology consultants, social workers, nutritionist and psychosocial counsellors. Peer-to-peer sessions were also held. Results: Six online meeting sessions were held between June 2020 and December 2020. A total of 199 participants were expected to join the six different meetings but a low meeting turn-out of 25.6% was experienced. Participants were later contacted to unravel the reasons for a low turn-out. A total of 129 participants were contacted of which 88 responded. Out of the 88 respondents, 29% reported a tight work schedule, 25% short time meeting alerts, 20% did not have access to smartphones, and 8% had poor internet connectivity and another 8% reported no internet data bundles to connect to the internet. Conclusions: Low attendance of online meetings was observed. Participants cited scheduling and internet access as major obstacles to attending online support group meetings. Improved access to the internet through smartphones, reliable internet connection, and affordable data are needed in underserved communities to fully unlock the benefits of virtual platforms namely cost savings and effective information sharing.

Abstract P851: Embracing Virtual Connection: An Innovative Systemwide Approach to Support Groups

Stroke ◽  
2021 ◽  
Vol 52 (Suppl_1) ◽  
Author(s):  
Carly J Rossi ◽  
Nicole Westensee ◽  
Dienst Elizabeth ◽  
Danielle Hagedorn ◽  
Julie Schafer ◽  
...  
Keyword(s):  
Support Groups ◽  
Support Group ◽  
High Risk Patient ◽  
Stroke Survivors ◽  
Group Leaders ◽  
Caregiver Support ◽  
Stroke Population ◽  
Virtual Platform ◽  
Problem Solve ◽  
Virtual Support

Background: Following a statewide stay-at-home order, Centura Stroke Support Group meetings were postponed indefinitely due to our high-risk patient population. Throughout the organization, stroke coordinators and support group leaders recognized the importance of community and continued support for the stroke population. The objective was to develop a creative survivor & caregiver support offering following social distancing guidelines given the Covid-19 restrictions, while collaborating & expanding opportunities for stroke support across the Centura system. Purpose: We hypothesized that we could successfully support stroke survivors & caregivers through a virtual platform during the pandemic & improve accessibility regardless of participant location or transportation. Methods: Group leaders assessed stroke survivors & caregivers ongoing needs through weekly outreach identifying the importance of the support group and a need for continued group access during the Covid-19 pandemic. Attendee’s indicated an interest in virtual support & a willingness to learn the required virtual platform. Leaders collaborated across the system to organize efforts in reaching survivors & caregivers at each hospital while sharing group curriculum & education systemwide; thus, allowing groups to meet at different times and increasing overall accessibility. Facilitators worked with individuals to problem solve potential issues navigating a virtual format. Results: The virtual format successfully provided support from the comfort & safety of home. Attendance increased in comparison to an in-person format. When asked about preference for an in-person setting only vs. a combination of in-person & virtual format, 80% selected a combination format. Working together across the system, stroke coordinators & group facilitators benefitted from a broader range of resources and connected the greater stroke community across Colorado. Conclusion: Regardless of future restrictions, hospitals should consider virtual support groups to increase accessibility for survivors & caregivers. There are benefits of the virtual platform which expand access to support by reducing barriers such as community availability and transportation.

scholarly journals Why Don’t Cancer Survivors Attend Cancer Support Groups in Toronto

2019 ◽  
pp. 1-8
Author(s):  
Tsorng-Yeh Lee ◽  
Beryl Pilkington ◽  
Grace Ho
Keyword(s):  
Cancer Survivors ◽  
Support Groups ◽  
Support Group ◽  
Health Care Providers ◽  
Normal Person ◽  
Care Providers ◽  
Cancer Support ◽  
Cancer Support Groups ◽  
Chinese Cancer Survivors ◽  
Depth Interviews

Background: Cancer is the leading cause of death for both men and women in Canada. Professionally or nonprofessionally led support groups have been recognized as a significant source of psychosocial support for cancer survivors. However, the participation rate was low and reasons for leaving a support group were not explored fully. Purpose: To explore the reasons why Chinese cancer survivors left or did not attend a cancer support group in Toronto. Methods: In-depth individual qualitative interviews were conducted. Five Chinese cancer survivors participated in in-depth interviews. Colaizzi’s phenomenological method was used to analyze the interview data. Results: Four themes were extracted from the in-depth interviews: “not fit in”, “not satisfied with the information provided”, “tried to be a normal person”, and “lack reliable transportation and convenient scheduling”. Conclusion: Cancer support groups can improve cancer survivors’ physical and psychosocial outcomes. The services can also help cancer survivors to obtain health related information and connect with professionals and peers. In recognizing the reasons why cancer survivors left support groups, health-care providers need to evaluate and be aware of the needs and difficulties for cancer survivors to attend support groups. They should match cancer survivors with appropriate groups. More language-friendly groups need to be launched, so cancer patients can easily find a suitable one from their neighborhood. 

scholarly journals Delivering More Effective Lung Cancer Support Groups: Applying Best Practices From the United States, United Kingdom, and Australia to Strengthen Skills and Inspire Facilitators

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 177s-177s
Author(s):  
M. Rigney
Keyword(s):  
Lung Cancer ◽  
Support Groups ◽  
Support Group ◽  
The United States ◽  
Lung Cancer Patients ◽  
Cancer Support ◽  
Cancer Support Groups ◽  
The Us ◽  
Cancer Support Group ◽  
The Uk

Background and context: Globally, 1.8 million people are diagnosed with lung cancer annually. Compared with other cancers, lung cancer patients experience higher levels of distress and greater unmet physical and emotional needs. A significant unmet need is social support. Face-to-face support groups can meet this need and may also may increase feelings of control and decrease distress. While lung cancer patients tend to prefer lung cancer-specific over general cancer groups, for many reasons these groups can be challenging to start and maintain. As a result, there are not enough groups available to meet the need. Aim: To provide guidance to those with struggling lung cancer groups, facilitators on three continents were surveyed to better understand their challenges and elicit creative ideas, collect practical tips and gather best practices for starting and maintaining successful lung cancer support groups. Strategy/Tactics: To understand the experiences of lung cancer facilitators, direct feedback was needed. To identify facilitators, member organizations of the Global Lung Cancer Coalition (GLCC) were tapped. Comprised of 37 charity organizations, GLCC is the international “voice” of the lung cancer community. Three GLCC organizations (one each from the United States-US, United Kingdom-UK and Australia-AUS) that either directly offer lung cancer support groups or manage networks of groups, agreed to participate. Program/Policy process: A 21 question online survey was sent to 131 support group facilitators, 7 in AUS, 42 in the UK and 82 in the US. Questions included length of time the group had been running, how often it met, average number of participants and other group/facilitator characteristics. Respondents were asked to identify their greatest challenges in group maintenance and solutions used to overcome those challenges. Knowledge gained from the survey and an extensive literature review were incorporated into the Lung Cancer Support Group Troubleshooting Guide. Outcomes: With a 56% completion rate, specific results varied by demographic area. Groups in AUS and the UK tended to have more participants, were more likely to be cofacilitated by nurses and held in public places. More groups in the US were based in hospitals and run by social workers. 75% of facilitators in the UK and AUS and 71% of those in the US said their groups were successful. What was learned: Creative solutions to lung cancer support group challenges were shared and keys to successful groups identified. Suitable for facilitators at all skills levels, the resulting Guide includes creative solutions for overcoming specific barriers and resource constraints. Widely distributed in the US, a small survey found that 91% of Guide users found it somewhat or very helpful. While written for lung cancer groups, any kind of support group, anywhere in the world that is struggling can benefit from the suggestions and ideas offered by the Guide.

Acceptability of the NCI patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE) in women with metastatic breast cancer (MBC).

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. e19633-e19633 ◽  
Author(s):  
Christine Nichols ◽  
Sandra A. Mitchell ◽  
Kathy Lang ◽  
Victoria Federico ◽  
Kathleen M. Castro ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Support Groups ◽  
Metastatic Breast ◽  
Patient Reported Outcome ◽  
Cancer Site ◽  
Free Text ◽  
Cancer Support ◽  
Patient Reported ◽  
Item Level ◽  
Related Quality

e19633 Background: NCI PRO-CTCAE is a new patient-reported outcome measure designed to enhance adverse event (AE) reporting in clinical trials by integrating the patient experience. The PRO-CTCAE item bank includes items representing the frequency (F), severity (S) and interference (I) with usual activities of 78 symptomatic AEs. The aim of this study was to examine the acceptability of a subset of PRO-CTCAE items to women receiving treatment for HER2+ MBC. Methods: 207 women on active treatment for HER2+ MBC (median 47 months since MBC diagnosis) were recruited from 6 U.S. breast cancer support groups and completed a web survey that included 18 PRO-CTCAE symptoms. Respondents were aged 45-64 years (71%), white (94%), college-educated (72%), with health-related quality of life rated good to excellent (61%) and median EQ5D utility score of 0.8. To explore PRO-CTCAE acceptability and data quality, we examined item level missingness, endorsement frequencies and binary and free-text responses about the comprehensibility of PRO-CTCAE items. Results: Item level missingness across all symptoms for each PRO-CTCAE dimension (F, S and I) ranged from 1.0% to 5.3%, with a median of 2.9%; interference associated with decreased appetite had the greatest missingness (5.3%). Excluding this outlier, maximum missingness was 3.9%. Endorsement frequencies of response choices for S of insomnia, constipation, fatigue, pain, anxiety/worry and sad/unhappy feelings support acceptable instrument sensitivity (all adjacent response points endorsed by >7% of respondents). Most respondents (92%) thought the items were easy to understand; a few were uncertain about how to rate symptoms such as anxiety, depression, insomnia and nausea if they were present but partially controlled with medication. Conclusions: These findings confirm and extend those of other studies demonstrating the acceptability of PRO-CTCAE. Evaluation in a more heterogeneous sample, particularly with respect to education and cancer site, is underway.

Community survivorship program: Kansas Hope in the Valley program.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 34-34 ◽  
Author(s):  
Cynthia Chauhan ◽  
Winston Tan
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Public Awareness ◽  
Full Time ◽  
Patient Centered ◽  
Community Based ◽  
Assistance Program ◽  
Cancer Group ◽  
Cancer Support ◽  
Cancer Support Groups

34 Background: Patient run community based survivorship programs are rare; most are affiliated with clinics and hospitals. Aim: To highlight a community based non-hospital affiliated program that had operated successfully for 32 years and review their best practices and challenges. Methods: Data collected from Hope in the Valley support group program. In Wichita, Kansas there is a patient formed community based support group/survivorship program supported and operated privately by survivors. Results: Todate a total of 16 disease specific and 13 general cancer support groups are affiliated with the organization and all the services are housed in a building. The support groups meet in different places and are grouped according to their proximity to their residences. Services provided include lodging assistance, women's boutique, support group meetings, transportation, patient assistance program, and a hospitality center. Every new patient with cancer in the community was given a referral to the center. Cancer support groups include breast, gynecologic, lung, kidney, gastrointestinal, lymphoma, leukemia, adolescent, childhood and general cancer group. In 2014 67, 709 patients attended support groups meetings and 2000 patients attended between January- April 2015. The hospitality center had 20, 160 visits and 19,877 physician's office treatment visits were conducted in 2014. There are 3 full time staff, 7 part time staff and 200 volunteers run the organization. Challenges include recruitment of volunteers, funding for the organization, existing as an independent program from churches, hospital, clinics, or national organizations, public awareness of the program, the governance and structure of the organization. Details of the challenges and how their organization is run will be presented. Many of the patients used their services often give back as volunteers, facilitators and others. Conclusions: This is a survivorship program run by patients, actively addressing patients concerns and issues. This could provide a framework for future groups that want to form a community based patient centered cancer support group.

scholarly journals 504 Creative Aftercare Program Amidst Coronavirus Pandemic

2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S99-S99
Author(s):  
Shana M Henry ◽  
Nicole M Kopari
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Psychosocial Support ◽  
The United States ◽  
Burn Center ◽  
Burn Survivors ◽  
Gift Cards ◽  
The Gift ◽  
Physical Impact ◽  
Virtual Support

Abstract Introduction Coronavirus disease presented itself early in 2019 inducing a considerable degree of fear, worry, and unknown throughout the United States. National and State governed laws imposed social distancing measures, quarantining citizens, and isolating infected persons. Apart from its physical impact, COVID-19 pandemic has brought numerous changes to people’s lives affecting people both physically and psychologically. A key component of quality of life of burn survivors consist of maintaining a long-term burn center connection through support groups. Our burn center developed a virtual format for aftercare to provide psychological support during the pandemic. Methods Regular attendees and new burn survivors were contacted by the aftercare specialist from an American Burn Associated verified burn center. Participants were surveyed on the best mode of contact and current addresses were obtained. “Happy Mail” was mailed to support group participants 3 times/month. Items included in these packages ranged from motivational sayings, gift cards, essential oils, candies, art projects, and reminders to log onto the virtual support groups. The gift packages also included a mental health check-in icebreaker. These gift packages took the place of our in-person support groups and contained all materials needed to engage and guide participation in the virtual monthly support group. Participants were then invited to join a social media support group for our local burn center. Results Burn survivors continued to receive quality psychosocial support to cope with and process feelings as well as validate emotions. Attendees regularly expressed gratitude in receiving “Happy Mail” as it brought a feeling of connectiveness to a group of burn survivors who rely on each other for peer support. The gift packages also served as a reminder of the upcoming virtual aftercare support groups as our attendance did not see a decline at monthly meetings. Conclusions Our experience suggests that a method of offering “Happy Mail” as part of a curriculum to augment virtual aftercare can be a model to adapt to the emotional support burn survivors and their family members need during the pandemic.

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