Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey

2017 ◽  
Vol 41 (8) ◽  
pp. 974-982 ◽  
Author(s):  
Stephanie T. Gumuchian ◽  
Vanessa C. Delisle ◽  
Linda Kwakkenbos ◽  
Mia Pépin ◽  
Marie-Eve Carrier ◽  
...  
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Group Members

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

2020 ◽  
Vol 5 (5) ◽  
pp. 1131-1138
Author(s):  
Lauren E. Dignazio ◽  
Megan M. Kenny ◽  
Erik X. Raj ◽  
Kyle D. Pelkey
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Online Survey ◽  
Multiple Choice ◽  
Speech Language Pathologists ◽  
Group Leaders ◽  
Self Help ◽  
Group Members

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.

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

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

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

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)*

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

2016 ◽  
Vol 1 (1) ◽  
pp. 3-16 ◽  
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 the  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 men’s resistance to testing, treatment and care as one of their biggest challenges.

scholarly journals A Qualitative Impact Evaluation of the First Love Yourself (FLY) Women’s Support Group

2016 ◽  
Vol 5 (2) ◽  
pp. 123
Author(s):  
Valerie Blackmon ◽  
Chalenna Cassell ◽  
Cathy G. McElderry ◽  
Olawunmi Obisesan
Keyword(s):  
Social Support ◽  
Focus Group ◽  
Qualitative Analysis ◽  
Support Groups ◽  
Support Group ◽  
Physical And Mental Health ◽  
Focus Group Study ◽  
Public Health Professionals ◽  
Group Members ◽  
And Coping

Research has shown that social support groups not only have significant effects on the physical and mental health of individuals, but can also be used as predictors of health outcomes. It is, therefore, important that social workers and other public health professionals are aware of the social support groups that exist in communities so as to find ways to utilize these to meet health needs. The study aims to explore the First Love Yourself (FLY) group, an empowerment-based support group specifically designed to meet the needs of Healthy Start consumers, parents and consortium members. A qualitative analysis of the data gathered from this focus group study yielded several key themes. While participants described finding other community resources helpful, they reported having no other outlet for confidential self-expression and connection to peers other than the FLY group. Group members also reported having improved self-esteem, relationships with their children, partners, and family, and ability to cope as a result of participation in the group. Participants further described gaining knowledge and learning skills that were helpful. This included learning parenting, communication, stress and anger management, budgeting, goal-setting and coping skills and techniques. Finally, qualitative analysis of the data gained from the focus group with participants and the group leader revealed the presence of all 11 curative factors described by Yalom (2005). The primary areas for improvement noted by the group and its leader were related to the frequency of group meetings. Both audiences indicated that additional sessions would be beneficial.

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

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.

561 Impact of Support Group for Teen Burn Survivors

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S121-S122
Author(s):  
Alexis Castro ◽  
Marissa Muro ◽  
William Dominic ◽  
Nicole M Kopari
Keyword(s):  
Peer Relationships ◽  
Support Groups ◽  
Support Group ◽  
The Other ◽  
Child Life ◽  
Burn Survivors ◽  
Age Appropriate ◽  
Group Members ◽  
Curriculum Topics ◽  
Positive Results

Abstract Introduction The recovery of a burn survivor continues long after the physical wounds are healed. Peer support groups offer survivors an opportunity for psychosocial recovery, particularly in the areas of self-acceptance, changes in perspective, and identity. Multiple published studies have found group support to be beneficial. We identified a need to provide a separate teen burn survivor support group to optimize engagement and to address specific age appropriate discussions. Methods The support group included female burn survivors 14–17 years of age. The group sessions were facilitated by a child life specialist and a burn nurse. Meetings were held on the same evenings as adult support groups to allow parents of the teen survivors to attend the adult meeting. During the first meeting, participants were given the opportunity to share topics they would like to discuss, and these were incorporated into the curriculum. Topics specific to teens included identity issues, body image, peer relationships, and what it means to be a burn survivor advocate. Additional outings have been incorporated such as family dinners and movie nights. After 15 months, participants were surveyed on their overall experience. Results The group was established in February 2018 and has had a steady participation of teen burn survivors. All teen burn survivors completed the participation survey. All teens strongly agreed their experience was positive, felt more connected to the other participants through the group activities, felt accepted by the other group members, and would recommend the teen support group to other teen burn survivors. Teens rated positive results for learning about themselves as a burn survivor, changing their perspective on their recovery, and the importance of participating in a support group. Conclusions Teen burn survivor support group has been shown to be a sustainable method to support these burn survivors and provide them with an opportunity for psychosocial recovery. Applicability of Research to Practice By sharing our experience with a teen burn survivor support group, we hope to inspire other burn centers in developing ways that their facility can meet the needs of burn survivors.

scholarly journals The Internet as an additional source of Information on rare illness. A Facebook support group for parents of children with craniosynostosis as a case study

2019 ◽  
Author(s):  
Elżbieta Nieroba ◽  
Dawid Larysz
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Empirical Studies ◽  
Strongly Correlated ◽  
Additional Source ◽  
Helping Others ◽  
Group Members ◽  
Source Of Information ◽  
Online Group

Introduction Empirical studies show that belonging to a support group contributes to patient and caretaker empowerment. They also show that support groups significantly help parents and caretakers of ill children reduce stress and better handle the illness. Aim The aim of the study is to expand knowledge of how social media support groups function, and what impact they have on members. Material and methods Data was collected using online surveys conducted on 54 respondents. Results and discussion In particular, the respondents experienced empowerment in terms of ‘exchanging information’ and ‘finding recognition.’ Thanks to the online group, they felt better prepared to meet with their doctors. They identified with other members of the group, and considered the information posted thereby to be understandable and valuable. The stories of other parents helped them realize they were not alone. Conclusions (1) Most group members were mothers. (2) Above all, the members were seeking information, not emotional support. (3) Doctors were the main source of information on the disease. (4) Analysis indicated that ‘exchanging information’ was most strongly correlated with empowering outcomes, while ‘helping others’ was least correlated. (5) It was difficult for members to evaluate empowering outcomes.

Support for Mothers Who Are Incarcerated: Impact of Mutual Aid Support Groups

2020 ◽  
Vol 4 (1) ◽  
pp. 77-93
Author(s):  
Heather Howard ◽  
Katie Clark ◽  
Mary Piltch
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Mutual Aid ◽  
Post Intervention ◽  
Community Based ◽  
Positive Communication ◽  
Community Based Organizations ◽  
Group Members ◽  
American Children ◽  
The Impact

BackgroundThe number of American children with a mother who is incarcerated increased by 131% between 1991 and 2007, impacting more than one million children. Because of increased focus on the problems surrounding parents in prison, there has been a growing recognition of how incarceration negatively impacts children and that repairing these relationships is critical to improving family functioning.ObjectiveThe focus of this article is to present a community-based participatory study that measured the impact of a support group provided to mothers during incarceration.MethodsIn this pilot study we used a nonexperimental design for an 8-week support group assessed at baseline and post intervention.FindingsThis study demonstrated favorable results in forming social connections and promoting positive communication between group members.ConclusionCommunity-based organizations, which offer support to parents, grandparents, and children impacted by incarceration, need continual funding.

scholarly journals A Support Group Model for Child Care Workers

1987 ◽  
Vol 3 ◽  
Author(s):  
Lisa Biemann
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Group Processes ◽  
Youth Care ◽  
Group Model ◽  
Child Care Workers ◽  
Child And Youth Care ◽  
Care Workers ◽  
Group Members ◽  
Method Of Evaluation

Based on a review of social support groups and her experiences in the field of child and youth care, the author proposes a support group model for child and youth care workers. Roles of group members, contracting procedures, group processes, and a method of evaluation are discussed. The author postulates that such a group model will aid in reducing job stress and enhance worker effectiveness.

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