Amputees’ Attitudes Toward Participation in Amputee Support Groups and the Role of Virtual Technology in Supporting Amputees: Survey Study

Background Acquiring information about and living with an amputation (or limb differential) is a lifelong endeavor. Although medical institutions address the immediate medical needs of amputees, information regarding how to live life as an amputee is provided from numerous sources, one of which is amputee support groups. Objective This study aimed at understanding why amputees join support groups, leave support groups, and possibly return to support groups as well as how technology, specifically virtual reality, might play a role in supporting patients’ needs. The results are intended to provide data for support groups, to increase their impact on amputee participants. Methods A 38-item online survey was developed based on the findings of a previous randomized trial. The survey was administered between April and September 2018 and divided into four sections: Demographics, Limb Loss History, Amputee Support Group Participation, and Technology Usage. Items used multiple-choice, drop-down menu, check-box formats with explanation boxes for open-ended responses. Descriptive analyses were performed for both qualitative (open-ended questions) and quantitative data. Results Of the 59 amputees enrolled, 54 completed the survey. All the respondents were aged 20-39 years, and nearly half of the older respondents thought audio and video teleconferencing or avatar-based technology would increase participation in support groups. The results suggest that an early goal for amputees who join support groups is to focus on regaining mobility and functionality in order to return to their normal life. Once achieved, the goal transitions to one of social connection with other amputees, although there is a caveat: Simply being an amputee may not provide sufficient connections for developing long-term social relationships. The strongest reason for joining a support group was to learn about living with an amputation, followed by networking and learning new skills. Conclusions The results suggest four key takeaways regarding amputee participation in support groups: (1) the needs of participants in amputee support groups change over time; (2) meeting content needs to be relevant to agendas primarily driven by participants; (3) support group participation is also driven by the desire to increase functionality by developing skills, become familiar with prosthetic technology, have more than amputation in common with other participants, and participate at the designated meeting time and location; and (4) the use of technology should support patients’ needs.

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

Perspectives of the ASHA Special Interest Groups ◽

10.1044/2020_persp-20-00014 ◽

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.

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Understanding Teens’ Perceptions and Aspirations towards Relationship with Personal Technology: Survey Study (Preprint)

10.2196/preprints.25871 ◽

2020 ◽

Author(s):

Muhammad Jee ◽

Alsa Khan

Keyword(s):

Online Survey ◽

Design Thinking ◽

Survey Study ◽

User Experience Design ◽

Personal Connection ◽

New Associations ◽

Future Technology ◽

Use Of Technology ◽

Personal Technology ◽

Age Range

BACKGROUND Understanding teens' relationship with technology is a pressing topic in this digital era. There seem to be both benefit and harmful implications that originate from use of technology by teens. Approximately 95% of teenagers have access to a smartphone, and several studies show a positive correlation between screen addiction and trends of Anxiety and Depression. While, at the same time, research shows that two-thirds of teenagers believe that technology is a necessity for connecting and making new friends. OBJECTIVE The aim of this research is to understand teens’ perceptions of their own and others’ relationship with personal technology and what future relationships do teens aspire to have with their technology. This will be fundamental in helping designers, healthcare practitioners and youth counselors inform design in technology accordingly. METHODS This research paper explores teens and technology relationship via three lenses. Lens-1 is teens' perception of their current relationship with their personal technology as users. Lens-2 is teens' perception of others' (parents, siblings or friends) relationship with personal technology as bystanders. Lens-3 is teens’ aspiration of how they wish to relate to their personal technology. We conducted an online survey with 619 teens in the 13-19 years age range. RESULTS We found that teens selected 'Essential,' 'Distractive,' and 'Addictive' most commonly to describe their own and others' relationship with personal technology. Whereas teens selected 'Provides an escape' more to describe their own relationship with technology. In contrast, they selected 'It's just a tool' and 'Creates Barrier' more to describe others' relationship with technology. These trends are consistent across ages and genders. Additionally, we found that 13-15 year-olds, particularly the majority of females in this age range, wish to see their future technology as their 'best friend.' However, 16-17 year-olds’ top choice was 'I don't believe in personal connection with mobile technology,’ and 18-19 year-olds’ top choice was 'My personal assistant.’ CONCLUSIONS Our three lenses approach is holistic as it allowed comparison of how teens perceive their relationship with personal technology as users vs. bystanders and from current vs. aspirational perspectives. This research not just confirms what is already known, but uncovers critical new associations more exclusive to teens' own relationship with technology. This paper presents related design implications to inform personal tech design thinking, including our guideline to shift 'user experience design' process to 'user relationship design.'

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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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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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Parkinson’s Disease Support Groups in Rural America: Barriers, Resources, and Opportunities

The Qualitative Report ◽

10.46743/2160-3715/2018.3312 ◽

2018 ◽

Author(s):

Erin Bush ◽

Reshmi Singh ◽

Mary Jo Hidecker ◽

Catherine Carrico

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Rural Communities ◽

Support Groups ◽

Support Group ◽

Qualitative Data ◽

Community Based Participatory Research ◽

Group Participation ◽

Suburban Areas ◽

Group Experiences

People with Parkinson’s disease who live in rural communities may lack information and support regarding their condition, compared to those in urban or suburban areas. For the study described herein, the researchers sought to gain a deeper understanding of support group experiences of rural Parkinson’s disease stakeholders through merging an interpretive phenomenological design with Community-based Participatory Research (CBPR). Using this merged approach, we collected qualitative data from five focus groups to gain a community perspective. The qualitative data was analyzed thematically, first, and then further explored for an overall essence. The theme, Support Group Benefits: Opportunities for Communication expounded upon the importance of support groups to Parkinson’s disease stakeholders. Barriers to Support Group Participation represented how the disease and the rural living conditions inhibited support group participation. Strategies to Improve Support Group Access demonstrated the different ways that the stakeholders had tried to overcome barriers and strengthen support groups. Notably, some participants discussed ways that support groups could increase their accessibility to more individuals with Parkinson’s living rurally so that they endured as a future resource. The themes and accessibility recommendations that emerged led the researchers to interpret the overall essence of this work as, experiencing support group benefits despite barriers, leaving a legacy.

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Support Group Participation

International Journal of MS Care ◽

10.7224/1537-2073.2018-099 ◽

2019 ◽

Vol 22 (3) ◽

pp. 115-121

Author(s):

Meghan Garabedian ◽

Erin Perrone ◽

Caitlin Pileggi ◽

Vanessa Zimmerman

Keyword(s):

Support Groups ◽

Support Group ◽

Significant Other ◽

Disease Course ◽

Newly Diagnosed ◽

Career Plans ◽

Group Participation ◽

Future Goals ◽

Before And After ◽

Significant Disability

Abstract Background: Patients newly diagnosed as having multiple sclerosis (MS) face an overwhelming number of questions about how it will affect their lives. Participation in a support group is one way to obtain information and receive support from others. However, existing support groups are often attended by patients with significant disability, resulting in newly diagnosed patients being hesitant to return. Methods: This qualitative pilot study explored perceptions of patients with newly diagnosed MS before and after participation in two monthly meetings. A support group was conducted each month using nursing staff, a physician, and a social worker. Prior to the first meeting, participants were asked to complete a questionnaire with open-ended questions to share their thoughts about how MS may affect their lives. After the two meetings, they were asked to complete the same questionnaire again. Results: Eight themes were identified: uncertain disease course; insecure future; physical, emotional, and cognitive impacts; effect on relationships with family and/or spouse/significant other; ability to develop future relationship with significant other; impact on career plans; impact on ability to achieve future goals; and impact on ability to care for self and family. Five of six participants who attended both meetings and one of four who attended only the first meeting expressed a change in their perception of how MS may affect their lives. Conclusions: A support group dedicated exclusively to newly diagnosed patients may provide an opportunity for patients to experience a change in perceptions of MS.

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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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Evaluating transgender youth and parent interest and preferences regarding support groups

Global Pediatric Health ◽

10.1177/2333794x20954680 ◽

2020 ◽

Vol 7 ◽

pp. 2333794X2095468

Author(s):

Shauna Marie Lawlis ◽

Patrick Butler ◽

Amy Middleman

Keyword(s):

Support Groups ◽

Support Group ◽

Group Structure ◽

Survey Study ◽

Sex And Gender ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Convenience Sample ◽

Interest Level ◽

Additional Support

The purpose of this cross-sectional survey study is to explore transgender teens’ and their parents’ interest in and preferences regarding support groups in an effort to optimally serve the entire family’s needs. The aims of the study were to: (1) describe transgender teens interest level and preferences regarding support groups; (2) describe parents of transgender teens interest level and preferences regarding support groups; and (3) compare responses based on demographics including teens versus parent, natal sex, and gender identity. De-identified surveys were collected from a convenience sample of transgender patients (N = 26), ages 13-18 years, and their parents (N = 20). Overall level of interest in support groups was 7.20/10 for youth and 7.95/10 for parents where 0 is not interested and 10 is very interested. Both groups endorsed benefits of a support group, including help with managing school issues, learning about local resources for transgender teens, and providing peer support. Both groups indicated “no time” as the most common potential barrier to attendance. Both groups expressed moderate interest in support groups, with minor differences between youths and parents noted in preferred support group structure. Further examination is warranted to determine optimal support group characteristics aimed specifically at parents and, separately, for youth. Additional support services might complement groups for a more comprehensive approach to support resources for this community.

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Parental Adherence to Home Activities in Early Intervention for Young Children With Delayed Motor Development

Physical Therapy ◽

10.1093/ptj/pzab023 ◽

2021 ◽

Author(s):

Afnan S Gmmash ◽

Susan K Effgen ◽

Camille Skubik-Peplaski ◽

Justin D Lane

Keyword(s):

Early Intervention ◽

Young Children ◽

Support Groups ◽

Motor Development ◽

Online Survey ◽

Physical Therapists ◽

Occupational Therapists ◽

The United States ◽

Survey Study ◽

Parent Support Groups

Abstract Objective The purpose of this study was to investigate the relationship between characteristics of home activities and coaching practices with the adherence of parents of children with motor delays to home activities provided by physical therapists and occupational therapists in early intervention. Methods An online survey study was developed and distributed to physical therapists and occupational therapists across the United States. A survey flier was posted online on parent support groups, physical and occupational therapy groups, newsletters and organizations supporting parents of children with disabilities. Results A total of 720 respondents participated in the survey. Four hundred forty-six participants from 49 states met the inclusion criteria and were included in the analysis. Parents indicated that physical therapists and OTs apply the five coaching practices (joint planning, observation, practice, reflection, feedback). However, parents (63%) reported more time was needed on coaching. Parents’ stated that therapists’ modeling the activities was the most helpful teaching technique that enhanced their adherence to home activities. Coaching practices, appropriateness of the home activities to daily routines and home environment, provision of home activities enjoyed by the child, and parent self-efficacy were all significantly associated (P < 0.5) with adherence to home activities. Conclusions Parent’s adherence to home activities is affected not only by the type of coaching used by the therapists but also by the characteristics of the home activities provided for young children with delayed motor development. Impact statement The results of this study provide additional evidence supporting individualization of home activities to promote the parent’s continuous provision of learning opportunities to promote their children’s development. There was also support of the therapists’ use of the five coaching practices in EI to support the parent’s application of home activities when the therapists are not present.

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Experiences, motivations, and perceived impact of participation in a Facebook-based support group for caregivers of children and youth with complex care needs (Preprint)

10.2196/preprints.33172 ◽

2021 ◽

Author(s):

Katherine Kelly ◽

Shelley Doucet ◽

Alison Luke ◽

Rima Azar ◽

William Montelpare

Keyword(s):

Support Groups ◽

Support Group ◽

Sense Of Community ◽

Online Survey ◽

Children And Youth ◽

Complex Care ◽

Care Needs ◽

Community Belonging ◽

Perceived Impact ◽

Complex Care Needs

BACKGROUND Caregivers of children and youth with complex care needs (CCN) often require considerable support to ensure the well-being of their families. Social media presents an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are one way that caregivers are accessing needed support; however, the impact that participation in these groups has on caregivers of children and youth with CCN is not known. OBJECTIVE This study aimed to: (1) explore the experiences of caregivers of children and youth with CCN who use a Facebook-based P2P support group to communicate; (2) understand their motivations to use the group; and (3) investigate its perceived impact on knowledge of programs and services and sense of community belonging in caregivers. METHODS A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based P2P support group for caregivers of children and youth with CCN in NB. The group was launched in October 2020 and resulted in 108 caregivers joining the group. An online survey was distributed, and semi-structured interviews were conducted with a sub-sample of members. Thematic analysis was used to identify, and report patterns related to caregiver experiences and perceived impacts of participation. RESULTS A sub-sample of members in the Facebook group completed the online survey (n=39) and interviews (n=14). Five themes emerged from interviews: (1) Safe Space; (2) Informational Support and Direction; (3) Virtually Connect with Peers; (4) Impact on Knowledge of Programs and Services; and (5) Degree of Community Belonging. Participants reported joining the group to obtain geographic-specific information support and to connect with peers. Many participants reported an improvement in knowledge of programs and services and felt connected to the community; however, group infancy and diversity among the caregiver population were cited as barriers to community belonging. CONCLUSIONS Online P2P support groups hold significant promise for supporting caregivers in ways that traditional methods have not been able to achieve. Findings from this study suggest that involvement in online, geographic-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCN. This work further provides insight into the experiences and motivations of caregivers of children and youth with CCN who participate in a private social media environment.

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