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.

scholarly journals ANALYSIS OF ONLINE INFORMATION ON SUPPORT GROUP MEETINGS FOR CROHN’S DISEASE PATIENTS

2021 ◽  
Vol 27 (Supplement_1) ◽  
pp. S52-S53
Author(s):  
Jooyoung Moon ◽  
Hanna Moon
Keyword(s):  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Support Groups ◽  
Support Group ◽  
Psychosocial Support ◽  
Online Information ◽  
Online Support Group ◽  
Significance Level ◽  
Group Meetings ◽  
Google Search

Abstract Background In 2018, the American College of Gastroenterology published guidelines for Crohn’s disease management that emphasized the importance of addressing the patient’s quality of life (QOL). Due to the unique challenges that they face, afflicted patients and their families benefit from support groups that provide psychosocial support. Hospitals have traditionally preferred in-person support group meetings, but there has recently been a great increase in the need for online meetings amidst the COVID-19 pandemic. With increasing usage of the Internet for health advice and assistance, it is important to assess the availability of information on support groups online. Methods Two independent investigators queried the terms “Crohn’s support group” using the Google search engine. The first 100 websites were analyzed and categorized into either informational websites (IW) or professional websites (PW) depending on their association. The mode of support group meetings was categorized as either online or in-person. Websites that included outdated events, were inaccessible, did not specify the mode of meeting, required additional contact, or were irrelevant were excluded. Statistical analyses were performed using the chi-squared test of independence with significance level at p<0.05. Results A total of 56 websites (33 IW, 23 PW) met our inclusion criteria. IW offered online meetings more often than PW (60.6% and 39.1%, respectively; p=0.11). In contrast, PW offered in-person meetings more often than IW (73.9% and 69.7%, respectively; p=0.73). Excluded websites (30 IW, 14 PW) were further analyzed for their reason for elimination. For IW, the most frequent causes of exclusion in descending order were as follows: irrelevance (30.0%), outdated (26.7%), inaccessible (20.0%), did not specify the mode of meeting (13.3%), and redirected for further information (10.0%). Listing of outdated sessions was the most common reason for exclusion of PW from the study (57.1%), and the proportion was significantly higher than IW (26.7%) (p=0.01). Conclusion Crohn’s disease patients face unique challenges that require special attention. Support groups are an important means of alleviating stress, depression, and anxiety in order to improve their QOL. Yet, due to the COVID-19 social distancing policies, many are refrained from participating in in-person sessions. This study illustrates that more online support group meetings are needed and that professional websites should improve on making regular updates for future meeting sessions.

Investigation of the “alternative” effects of an online support group for mental health problems among Japanese adults: A cross-sectional study (Preprint)

2020 ◽  
Author(s):  
Osamu Kobori ◽  
Naoki Yoshinaga
Keyword(s):  
Mental Health ◽  
Support Groups ◽  
Support Group ◽  
Help Seeking ◽  
Mental Health Problems ◽  
Health Problems ◽  
Online Support ◽  
Online Support Groups ◽  
Online Support Group ◽  
Usage Frequency

BACKGROUND Owing to the rapid development of social networking services, online support groups vary widely both in goal and structure. Several studies have shown the potential effectiveness of online support groups, such as reducing psychological distress (eg depression) among individuals with mental health problems. However, online support groups often do not aim at effectiveness regarding distress-relief-related outcomes. OBJECTIVE The U2plus.jp (hereinafter U2plus) is an online support group for individuals with depression; in it, people support each other in structured ways while engaging in simple cognitive behavioral therapy (CBT) exercises. This study aimed to examine if usage frequency of the U2plus functions are associated with decreased stigma and increased consumer. METHODS In total, 355 U2plus users took part in an online survey. They were asked what therapy they had ever received, how often they logged into it and used each of its functions, and completed the following questionnaires: The Patient Health Questionnaire-9 (PHQ-9), the Perceived Devaluation Discrimination Scale, and the General Help Seeking Scale. RESULTS Regarding the therapy they received, 89.3% (n=308) had been on medication for mental health problems, and 67.5% (n=233) had received psychotherapy or mental health counselling. Regarding the usage frequency, approximately 20% of the participants signed in to U2plus and used its functions more than once a week. The usage frequency of U2plus functions was not associated with perceived stigma. However, usage frequency of some functions was correlated to help seeking intentions from formal sources (eg doctors and psychologists). Moreover, 90% of the participants had a history of medication for their mental health. Additionally, the more depressed participants were, the more frequently they used U2plus. CONCLUSIONS It was suggested that online support groups may serve as an alternative treatment option for those who are already undergoing pharmacological treatment and are willing to seek help from whatever source they deem helpful.

Leveraging Facebook as a Peer-Support Group for Students

2014 ◽  
pp. 195-212
Author(s):  
Joni Salminen
Keyword(s):  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Social Issues ◽  
Drop Out ◽  
The Internet ◽  
Technology Barriers ◽  
Peer Support Group ◽  
Teacher Needs ◽  
User Friendly

This chapter reports the use of Facebook in a Digital Marketing course in a Finnish university as a peer-support group for a course consisting of 80 marketing students. It identifies seven types of student-/teacher-generated content: (1) course-related posts, (2) substance-related posts, (3) course feedback, (4) course recommendations, (5) event posts, (6) job posts, and (7) business-related posts. It also discusses educators’ problems of using social media as a course support. For example, there is a risk of artificial communication if participation is required but motivation for posting is purely extrinsic. Commercial social networks may be useful in education because they are user-friendly, easy to adopt, and involve less friction than systems isolated from students’ day-to-day usage of the Internet. Peer support frees teachers’ time, but it needs to be devised correctly for students to participate. In practice, the teacher needs to invest time and effort in providing interesting content and guidance. More than technology, barriers of peer support relate to social issues and expertise – the students must differ in their substantive knowledge so that peer support is possible, and students must feel comfortable to ask for and provide help. Interestingly, the drop out of students in the group can be kept low even after the course by posting interesting content. In this sense, the group may demonstrate stronger ties than peer support groups that dissolve after the course.

scholarly journals Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support Group Leader EDucation (SPIN-SSLED) Program

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Brett D. Thombs ◽  
◽  
Kylene Aguila ◽  
Laura Dyas ◽  
Marie-Eve Carrier ◽  
...  
Keyword(s):  
Training Program ◽  
Support Groups ◽  
Support Group ◽  
Self Efficacy ◽  
Controlled Trial ◽  
Group Leader ◽  
Group Leaders ◽  
Post Intervention ◽  
Patient Centered ◽  
Patient Support Group

Abstract Background Some people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to challenges that could be addressed via leader training. The Scleroderma Patient-centered Intervention Network (SPIN), along with SSc patient organization partners, developed a training program for SSc patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. We recently completed a feasibility trial in which we successfully delivered the program to two groups of support group leaders who reported a high level of satisfaction with the program and its delivery. The primary objective of the full-scale SPIN-SSLED trial is to evaluate the effect of the program on support group leaders’ self-efficacy for carrying out their leadership role. Secondary objectives include evaluating effects on leader burnout, leader satisfaction (participation efficacy), and emotional distress. Methods/design The SPIN-SSLED trial is a pragmatic randomized controlled trial (RCT) in which 180 support group leaders will be randomly allocated to training groups of 6 participants each or to a waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups, but not in the waitlist control. Participants allocated to the training program will receive the 13-module SPIN-SSLED Program, delivered via webinar over the course of 3 months in weekly 60–90-min sessions. The primary outcome is leader self-efficacy, measured by the Scleroderma Support Group Leader Self-efficacy Scale post-intervention. Secondary outcomes are leader self-efficacy at 3 months post-intervention, and leader burnout, volunteer job satisfaction (participation efficacy), and emotional distress post-intervention and at 3 months post-intervention. Discussion The SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks. The program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups, and to be adapted for other chronic diseases. Trial registration ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.

scholarly journals Coping with the Ultimate Deprivation: Narrative Themes in a Parental Bereavement Support Group

2011 ◽  
Vol 63 (2) ◽  
pp. 141-160 ◽  
Author(s):  
Laura R. Umphrey ◽  
Joanne Cacciatore
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Parental Bereavement ◽  
Group Setting ◽  
Bereavement Support ◽  
Bereaved Parents ◽  
Bereavement Support Group ◽  
Life Circumstances ◽  
Group Meetings

Support groups are often used to help individuals cope with challenging and unusual life circumstances through narration. Yet, little is known about specific meta-communication within a support group setting and in what ways these interactions may benefit participants. This study uncovers narrative themes that were expressed during a series of support group meetings specific to bereaved parents. Three central narratives were revealed in the analysis including the death story narrative, coping/negotiating narrative, and connecting through communication with others narrative. This research underscores the vital outlet that the support group serves for participants and the communicative means by which subjective healing can occur.

scholarly journals The Public Health Impact and Policy Implications of Online Support Group Use for Mental Health in Singapore: Cross-Sectional Survey (Preprint)

2020 ◽  
Author(s):  
Kumarasan Roystonn ◽  
Janhavi Ajit Vaingankar ◽  
Boon Yiang Chua ◽  
Rajeswari Sambasivam ◽  
Saleha Shafie ◽  
...  
Keyword(s):  
Public Health ◽  
Mental Health ◽  
Support Groups ◽  
Support Group ◽  
Mental Health Problems ◽  
Online Support ◽  
Online Support Groups ◽  
Online Support Group ◽  
Cross Sectional ◽  
Treatment Services

BACKGROUND The wide mental health treatment gap continues to pose a global and local public health challenge. Online support groups are on the rise and could be used to complement formal treatment services for mental health. OBJECTIVE This study aimed to examine the prevalence of online support group use and explore factors associated with the use in the general population using data from a national cross-sectional mental health survey in Singapore. METHODS Singapore residents aged 18 years and above participated in a nationally representative household survey in which the World Health Organization Composite International Diagnostic Interview 3.0 was administered by trained interviewers to examine the use of online support groups for mental health. Multiple logistic regressions were used to analyze the association of online support group use with various sociodemographic and health factors. RESULTS A total of 6110 respondents with complete data were included in this study. Overall, 10 individuals per 1000 adults (1%) reported seeking help from online support groups for their mental health problems. Compared to younger adults (those aged 18 to 34 years) and those with university education, individuals aged 50 to 64 years (<i>P</i>&lt;.001; OR 0.1, 95% CI 0.0-0.3) and those with preuniversity qualifications (<i>P</i>=.02; OR 0.1, 95% CI 0.0-0.8) were less likely to use online support groups for mental health, respectively. Participants with a Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) mental disorder were 6.8 times more likely (<i>P</i>&lt;.001; 95% CI 3.0-15.4) to use an online support group; in particular, individuals with major depressive disorder (<i>P</i>&lt;.001; OR 5.4, 95% CI 2.1-13.8) and obsessive compulsive disorder (<i>P</i>=.01; OR 3.5, 95% CI 1.3-9.7) were more likely to use an online support group for their mental health. CONCLUSIONS Online support groups could be used to complement formal treatment services, especially for mood and anxiety-related disorders. As online support group use for mental health issues may be more prevalent among younger people, early detection and accurate information in online support groups may guide individuals toward seeking professional help for their mental health problems.

Ethics and Engagement in Communication Scholarship

2004 ◽  
pp. 174-202 ◽  
Author(s):  
Mary K. Walstrom
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Theoretical Framework ◽  
Online Support ◽  
Research Approach ◽  
Online Support Groups ◽  
Ethical Orientation ◽  
Ethical Challenges ◽  
Online Support Group ◽  
Ethical Concerns

This chapter asserts an engaged research approach that aims to meet the ethical challenges of public, online support group studies. First, the intrinsic ethical orientation of the theoretical framework undergirding this approach is detailed. Second, how this approach may guide qualitative-interpretive analyses of public, online support groups is explored. This section features two excerpts from a larger study conducted of one such group. Third, three additional features of engaged research that bolsters its capacity to address the ethical concerns of public, online support group studies are presented. The chapter with a call and rationale for future engaged research of such sites, stressing the benefits to research and support group communities alike.

Online Support Groups as a means of Chronic Pain Management for Patients with Genetic Disorders (Preprint)

2021 ◽  
Author(s):  
Sadaf Ashtari ◽  
Joseph Taylor ◽  
Kelsie Goff
Keyword(s):  
Chronic Pain ◽  
Pain Management ◽  
Information Extraction ◽  
Support Groups ◽  
Support Group ◽  
Rare Diseases ◽  
Online Support ◽  
Online Support Groups ◽  
Online Support Group ◽  
Ehlers Danlos Syndrome

BACKGROUND Rare diseases with symptoms that include chronic pain present a challenge for patients and providers to manage. Lack of experience with rare diseases may result in clinicians relying on general pain management strategies such as narcotics in circumstances where alternative forms of pain support may be available. OBJECTIVE In this research, we examine how patients extract information, and receive emotional support, through the use of an online support group. We develop a model to describe factors that both enhance and constrain the use of online support groups to engage with patients. METHODS This study uses path analysis to examine survey data related to participation in an online support group from patients managing Ehlers-Danlos Syndrome (EDS). RESULTS We present a model with excellent goodness of fit indices that exceed a CFI of .995, and an RMSEA value of less than .04. Our model presents nine hypotheses which are all supported. Our analysis of the data shows a significant value of all predicted paths with a p<.001. CONCLUSIONS Our findings demonstrate that a feeling of belonging, a willingness to share, and comfort with the technology that supports an online community are associated with patients reporting greater levels of information extraction and social support from online support groups. We further find that greater levels of concern regarding privacy and security of information were associated with lower levels of willingness to share and information extraction of patients from online support groups.

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