Stuttering-Related Podcasts: Audio-Based Self-Help for People Who Stutter

Purpose It is known that people who stutter (PWS) benefit from self-help experiences, such as attending support groups or conferences. However, limited research has been done to explore the listening of stuttering-related podcasts as a form of self-help for PWS. This study seeks to understand the reasons why PWS listen to stuttering-related podcasts and provide descriptions of their listening experiences. Method Thirty-three PWS who have listened to stuttering-related podcasts were recruited to participate in an online survey that included multiple-choice and open-ended questions. Responses were analyzed and grouped into descriptive themes. Results Participants reported listening to stuttering-related podcasts as a way to gain information and perspective. They also reported experiences that fit themes of empowerment and camaraderie, as a result of listening. Conclusions Stuttering-related podcasts seem to be a positive self-help tool for PWS. Stuttering support group leaders and/or speech-language pathologists may consider introducing their group members or clients who stutter to this type of audio-based self-help experience.

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Facebook support groups for pediatric rare diseases: opportunities, limitations and privacy concerns (Preprint)

10.2196/preprints.31411 ◽

2021 ◽

Author(s):

Sarah Catrin Titgemeyer ◽

Christian Patrick Schaaf

Keyword(s):

Rare Disease ◽

Support Groups ◽

Support Group ◽

Rare Diseases ◽

Health Professionals ◽

Online Survey ◽

Privacy Rights ◽

Cross Sectional ◽

Privacy Concerns ◽

Group Members

BACKGROUND Due to the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups. OBJECTIVE We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy and views on using Facebook for communication between health professionals and parents, pharmaceutical companies and for study recruitment. METHODS We contacted twelve Facebook support groups for twelve respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey. RESULTS Of 231 respondents, 87.0% (n=201) respondents were female, 12.6% (n=29) were male and 1 respondent reported another sex (0.4%, n=1). Respondents’ mean age was 41.56 years (SEM=0.621, SD=9.375). 91.3% (n=211) respondents were parents (183 mothers, 27 fathers, 1 other sex). 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week and participated actively (commented/posted) once a month. 79,6% agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and non-group-members. CONCLUSIONS Our study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group’s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children’s privacy rights in this context. CLINICALTRIAL DRKS00016067

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Exploring the use of a Facebook-based support group for caregivers of children and youth with complex care needs (Preprint)

10.2196/preprints.33170 ◽

2021 ◽

Author(s):

Katherine Kelly ◽

Shelley Doucet ◽

Alison Luke ◽

Rima Azar ◽

William Montelpare

Keyword(s):

Support Groups ◽

Support Group ◽

Online Survey ◽

Children And Youth ◽

Advisory Council ◽

Support Needs ◽

Complex Care ◽

Care Needs ◽

Group Members ◽

Complex Care Needs

BACKGROUND Caregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Online peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of CCN use and potentially benefit from these groups. OBJECTIVE The aim of this study was to explore the use of an online P2P support group for caregivers of children and youth with CCN and investigate factors related to its sustained use by members. METHODS The study sample consisted of individuals who joined a closed Facebook group and analysis of content published to the group. In Phase 1, a Facebook group was developed in consultation with a patient and family advisory council and members were recruited to the group. Phase 2 of this research consisted of an observation period during which posts and related interactions (i.e., likes, loves, and comments) by members were collected. In Phase 3, an online survey was distributed, and semi-structured interviews were conducted with a sub-sample of group members; survey and interview data were analyzed using thematic analysis. RESULTS A total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448 likes and 94 loves); 37 of these posts were made by group members and 56 by moderators. An online survey was completed by a sub-sample of 39 members and 14 members participated in interviews. Content analyses of posts by members revealed inquiry (46%), informational (40%), and emotional posts (11%) to be most common. Emotional posts received the greatest number of interactions (x̅ =24.5). Five themes emerged from interviews related to the use of the group and mediating factors of interactions between group members: 1) resource for information; 2) altruistic contribution; 3) varying level of engagement; 4) growing activity in the group; and 5) moderators as contributing members. CONCLUSIONS These findings demonstrate that caregivers of children and youth with CCN seek geographic-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge of how caregivers use Facebook groups to meet their support needs through moderate and passive engagement.

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Group Experiences and Individual Differences in Stuttering

Journal of Speech Language and Hearing Research ◽

10.1044/2019_jslhr-19-00138 ◽

2019 ◽

Vol 62 (12) ◽

pp. 4335-4350 ◽

Cited By ~ 6

Author(s):

Seth E. Tichenor ◽

J. Scott Yaruss

Keyword(s):

Individual Differences ◽

Support Groups ◽

Support Group ◽

Affective States ◽

Life Outcomes ◽

Self Help ◽

Wide Range ◽

Group Experiences ◽

History Of ◽

Adults Who Stutter

Purpose This study explored group experiences and individual differences in the behaviors, thoughts, and feelings perceived by adults who stutter. Respondents' goals when speaking and prior participation in self-help/support groups were used to predict individual differences in reported behaviors, thoughts, and feelings. Method In this study, 502 adults who stutter completed a survey examining their behaviors, thoughts, and feelings in and around moments of stuttering. Data were analyzed to determine distributions of group and individual experiences. Results Speakers reported experiencing a wide range of both overt behaviors (e.g., repetitions) and covert behaviors (e.g., remaining silent, choosing not to speak). Having the goal of not stuttering when speaking was significantly associated with more covert behaviors and more negative cognitive and affective states, whereas a history of self-help/support group participation was significantly associated with a decreased probability of these behaviors and states. Conclusion Data from this survey suggest that participating in self-help/support groups and having a goal of communicating freely (as opposed to trying not to stutter) are associated with less negative life outcomes due to stuttering. Results further indicate that the behaviors, thoughts, and experiences most commonly reported by speakers may not be those that are most readily observed by listeners.

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

Stroke ◽

10.1161/str.52.suppl_1.p851 ◽

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.

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The Common Bond

10.3828/liverpool/9781781381236.003.0003 ◽

2015 ◽

pp. 19-29

Author(s):

Anne Eyre ◽

Pam Dix

Keyword(s):

Support Groups ◽

Legal Status ◽

Common Bond ◽

Action Group ◽

Self Help ◽

Group Members ◽

The Common ◽

Set Up ◽

The Uk

This chapter discusses how those affected by a disaster often form an extraordinary common bond. Self-help support and action group members say that only with others from 'their' disaster can they open up completely, without fear of judgement, about the most difficult aspects of their experience. The examples in this chapter illustrate the kinds of support groups that grew out of those disasters of the 1980s, including the King's Cross Families Action Group, the Herald Families Association, the UK Families Flight 103, the Marchioness Action Group, the Stairway to Heaven Memorial Trust, and the MV Derbyshire Families Association. There are a number of different options for the structure of family and survivor groups in terms of membership, legal status, and management. Some groups have set up unincorporated associations, while a few have chosen to apply for charitable status. Ultimately, representatives from the groups of the 1980s, as well as individual survivors and bereaved people, went on to form, join, and develop Disaster Action.

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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 ◽

10.1186/s13063-019-3747-z ◽

2019 ◽

Vol 20 (1) ◽

Cited By ~ 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.

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Mothers’ Perceptions of the Influence of a Breastfeeding Support Group in Achieving Their Breastfeeding Goals

Clinical Lactation ◽

10.1891/clinlact-d-19-00019 ◽

2020 ◽

Vol 11 (2) ◽

pp. 74-83

Author(s):

JoAnne Silbert-Flagg ◽

Deborah Busch ◽

Joycelyne Absolu Bataille

Keyword(s):

Support Groups ◽

Support Group ◽

Online Survey ◽

Breastfeeding Support ◽

Chi Square ◽

Cross Sectional ◽

Convenience Sample ◽

Peer Support Group ◽

Extended Duration ◽

Duration Of Breastfeeding

ObjectiveThe study aims were to identify maternal perceptions about the influence of a hospital-based breastfeeding peer support group in addressing breastfeeding concerns, assisting them to achieve their breastfeeding goals, and providing additional benefits.MethodsA descriptive, cross-sectional, online survey was conducted with a convenience sample of women who attended a hospital's breastfeeding support group. Participants reported their breastfeeding concerns and breastfeeding goals prior to and after their attendance at the breastfeeding support group. Changes in reported breastfeeding concerns and breastfeeding goals were analyzed with chi-square statistics.ResultsAfter participating in the support group session, survey participants (N = 100) expressed less concern about latching (81%–66%), mother's milk production (77%–62%), breastfeeding while apart from infant (75%–65%), and all other reported breastfeeding concerns. Overall, participants reported the support group successfully addressed their concerns (92%, n = 89), provided adequate time for responses to their questions (87%, n = 87), and assisted them to achieve their breastfeeding goals (91%, n = 88). Over 90% of participants planned to exclusively breastfeed through 6 months.ConclusionHospital-based breastfeeding support groups can successfully address mothers’ key breastfeeding concerns and support extended duration of breastfeeding.

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Challenging generalisations: Leveraging the power of individuality in support group interactions

Language in Society ◽

10.1017/s0047404520000603 ◽

2020 ◽

pp. 1-28

Author(s):

Marco Pino

Keyword(s):

Conversation Analysis ◽

Drug Addiction ◽

Support Groups ◽

Support Group ◽

Drug Users ◽

Sense Making ◽

Social Category ◽

Group Interactions ◽

Group Members ◽

The Uk

Abstract Explicit generalisations are statements that attribute a characteristic to all members of a social category (e.g. drug users). This article examines the tensions and negotiations that the use of generalisations prompts within support group interactions. Generalisations are practices for the cautious implementation of delicate actions. They can be used to convey perspectives on group members’ experiences by implication (without commenting on them directly), by virtue of those members belonging to the category to which a generalisation applies. At the same time, generalisations can misrepresent some individual cases within that category. Using conversation analysis, the article investigates how generalisations are deployed, challenged, and then defended in support group interactions. These analyses identify a tension between utilising the sense-making resources that category memberships afford, and the protection of its members from unwelcome generalisations. Data consist of recorded support-group meetings for people recovering from drug addiction (in Italy) and for bereaved people (in the UK). (Bereavement, conversation analysis, delicacy, drug addiction, generalisation, individuality, membership categorisation, morality, support groups)*

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IS STIGMA RECEDING? STORIES OF AIDS SUPPORT GROUP MEMBERS IN PIETERMARITZBURG, SOUTH AFRICA

Oral History Journal of South Africa ◽

10.25159/2309-5792/1589 ◽

2016 ◽

Vol 1 (1) ◽

pp. 3-16 ◽

Cited By ~ 1

Author(s):

Philippe Denis ◽

Molly Longwe ◽

Ntokozo Zitha

Keyword(s):

Support Groups ◽

Support Group ◽

Gender Stereotypes ◽

Antiretroviral Treatment ◽

Health Conditions ◽

People Living With Hiv ◽

Kwazulu Natal ◽

Group Members ◽

Oral History Interviews ◽

Living With Hiv

The paper describes the experience of people living with HIV in KwaZulu-Natal. It is based on oral history interviews with members of two support groups in the Pietermaritzburg area that were conducted in 2009 and 2011, respectively. The interviews show that, if stigma and discrimination remain a key component of the experience of people living with HIV in KwaZulu-Natal, certain evolutions are taking place. Nearly all theÂ nterviewees were on antiretroviral treatment and their health conditions had improved. They deeply appreciated the solidarity they found in their support groups. In most cases their families, friends and neighbours responded positively when they disclosed their status. Yes, obstacles remained. The interviewees, most of whom were women, saw gender stereotypes and menâ€™s resistance to testing, treatment and care as one of their biggest challenges.

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