scholarly journals Virtual support groups in pediatric hematology/oncology during COVID‐19: Lessons learned from the SickKids experience

2021 ◽  
Author(s):  
Ammara Kaka ◽  
Wendy Shama ◽  
Sonia Lucchetta ◽  
Carly Nishimura ◽  
Diana Cottingham ◽  
...  
Keyword(s):  
Support Groups ◽  
Lessons Learned ◽  
Pediatric Hematology ◽  
Virtual Support

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 Research Participation among Community Dwelling Dementia Caregivers: Reflections and Suggestions

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 799-799
Author(s):  
Kiana Cruz ◽  
Sama Joshi ◽  
Taeyoung Park ◽  
M Carrington Reid ◽  
Keela Herr ◽  
...  
Keyword(s):  
Support Groups ◽  
Ecological Model ◽  
Controlled Trial ◽  
Small Sample ◽  
Lessons Learned ◽  
Community Dwelling ◽  
Central Research ◽  
Research Strategies ◽  
Dementia Caregivers ◽  
Diverse Range

Abstract Clinical trials for dementia caregivers have suffered from small sample sizes that lack adequate power to detect treatment benefits. Addressing these methodological shortcomings is contingent upon successful recruitment and enrollment of caregiver participants, but major barriers impede their participation in research. This presentation describes the lessons learned from recruiting and enrolling dementia caregivers into a pilot randomized controlled trial designed to help caregivers recognize and communicate about pain in dementia care recipients. Using Bronfenbrenner’s ecological model, we organize our discussion of challenges and opportunities into three levels: community (ecosystem), institution (microsystem), and individual. A key challenge at the community level was gatekeeping by organization leaders, including those from support groups, senior centers, and congregate living facilities. At the institutional-level, challenges included an absence of administrative mechanisms for identifying caregivers and a lack of caregiver research expertise on the Institutional Review Board. At the individual-level, challenges included time constraints and varying motivations for participating in research. Strategies for overcoming these challenges spanned the three levels and included establishing trust and rapport with various constituencies; adapting our recruitment approaches to meet the specific motivations of prospective participants; and refining recruitment scripts to allow for greater personalization. Employing these strategies, which can be generalized to recruit other hard-to-reach populations, helped to overcome recruitment challenges and expedite enrollment of caregivers from a diverse range of sociodemographic backgrounds. Further improvement will require coordinated changes at the institutional and community levels, including the development of central research registries and administrative mechanisms for identifying caregivers.

Avatar Based Technology Use in Dementia: A Review (Preprint)

2018 ◽  
Author(s):  
Joyatee M Sarker ◽  
Richard J. Holden ◽  
Malaz A. Boustani ◽  
Daniel Bateman
Keyword(s):  
Cognitive Function ◽  
Support Groups ◽  
Technology Use ◽  
Healthcare Providers ◽  
Sensor Technology ◽  
Dementia Caregivers ◽  
Potential Applications ◽  
Virtual Experiences ◽  
Emotional Value ◽  
Virtual Support

BACKGROUND The number of Americans with dementia is increasing, and there is a need to assist clinicians, patients, and informal caregivers in the assessment and monitoring of disease progression, and activities of daily living in patients with dementia. Technologies that use avatars to help patients with dementia have become more prevalent and hold promise to assist caregivers and healthcare teams. OBJECTIVE Describe the state of the literature for current and potential applications of avatar technology for individuals with dementia. METHODS Articles were screened using the search engines Pubmed and Google Scholar. The search terms used for the screening were a combination of: “avatar”, “geriatric”, “dementia”, and “mild cognitive impairment”. Each article was assessed by its methodological quality to determine its value for the review. RESULTS Avatars can be beneficial for a range of dementia care objectives. Virtual reality environments with avatar implementations, speech recognition technology and sensor technology can be used to assess a patient’s cognitive function. Gamifying virtual experiences with avatars, conversational artificial intelligence, and avatar-based virtual support groups can improve socialization in patients with dementia and their caregivers. Avatars can also help patients with dementia by prompting sequential tasks, setting reminders, and providing emotional support. We recommend avatars have several characteristics to optimally benefit the older population with dementia. These characteristics include: physical neutrality in terms of gender and ethnicity, emotional value, use of sound and large icons for the benefit of patients with sensory impairments, and adaptability to the patients’ emotions and cognitive function. The devices that implement avatars should be easy to use for the patient using large icons, clickable buttons, and using familiar interfaces. Implementation of these facets into avatar-based technology can help improve their efficacy in patients with dementia. CONCLUSIONS Avatars can assist patients with dementia, caregivers, and healthcare providers in a number of ways. More research is needed in this area of focus.  

Internet-Based Clinical Services: Virtual Support Groups for Family Caregivers

2006 ◽  
Vol 24 (2-3) ◽  
pp. 39-54 ◽  
Author(s):  
Elsa Marziali ◽  
Thecla Damianakis ◽  
Peter Donahue
Keyword(s):  
Family Caregivers ◽  
Support Groups ◽  
Clinical Services ◽  
Virtual Support

scholarly journals Early career mentoring through the American Society of Pediatric Hematology/Oncology: Lessons learned from a pilot program

2016 ◽  
Vol 64 (3) ◽  
pp. e26252 ◽  
Author(s):  
Sherif M. Badawy ◽  
Vandy Black ◽  
Emily R. Meier ◽  
Kasiani C. Myers ◽  
Kerice Pinkney ◽  
...  
Keyword(s):  
Lessons Learned ◽  
Early Career ◽  
Pilot Program ◽  
Pediatric Hematology ◽  
American Society

Connecting Caregivers to Support: Lessons Learned From the VA Caregiver Support Program

2019 ◽  
Vol 39 (4) ◽  
pp. 368-376 ◽  
Author(s):  
Rebecca Bruening ◽  
Nina Sperber ◽  
Katherine Miller ◽  
Sara Andrews ◽  
Karen Steinhauser ◽  
...  
Keyword(s):  
Support Groups ◽  
Rural Areas ◽  
Lessons Learned ◽  
Support Program ◽  
Future Research ◽  
Structured Interviews ◽  
Supportive Services ◽  
Caregiver Support ◽  
National Priority ◽  
Caregiver Interventions

Development and evaluation of supportive caregiver interventions has become a national priority. This study’s aim was to evaluate how caregivers participating in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP) use and value supportive services. Qualitative semi-structured interviews ( N = 50 caregivers) were the core of a mixed-methods design, and surveys ( N = 160) were supplemental. Caregivers who had used CSP services valued emotional, functional, and health care navigational support, calling support groups and the program coordinator their “lifeline.” However, many described a lack of connection with the program—not knowing about or successfully engaging in program services—and needed more information about available resources. Caregivers in rural areas or caring for individuals with specific diseases reported needing tailored services to meet their unique needs. Policy makers and practitioners should proactively promote supportive services for caregivers. Future research should explore strategies for reducing barriers to accessing tailored support to meet the needs of a diverse caregiver population.

Transitional Supportive Housing in a Rural Location: A Preliminary Case Study and Lessons Learned

2008 ◽  
Vol 2 (1) ◽  
pp. 36-46 ◽  
Author(s):  
Jeanne Mekolichick ◽  
Jennifer Davis ◽  
James Chouinard
Keyword(s):  
Support Groups ◽  
Quantitative Data ◽  
Lessons Learned ◽  
Supportive Housing ◽  
Descriptive Data ◽  
Qualitative And Quantitative ◽  
Program Success ◽  
Rural Town ◽  
The Individual

Research demonstrates the critical need for transitional supportive housing (TSH) for survivors of domestic violence (Melbin, Sullivan, and Cain, 2003). However, the presence of such programs around the country is inconsistent, and where programs do exist, little consensus has been attained on what aspects of these programs are most beneficial for clients (Melbin et al., 2003). This paper presents initial descriptive data based on a program evaluation of a TSH facility located in a small rural town in the southern United States. Assessments at both the individual and program levels included gathering qualitative and quantitative data. We present data on the clients in the program as well as the support groups conducted from 2004 through spring 2006. Discussed in the conclusion are lessons learned and the next steps for greater program success.

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