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

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.

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

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.

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.

scholarly journals Perceptions and experiences of rare diseases among General Practitioners: an exploratory study

2021 ◽  
Author(s):  
Julie McMullan ◽  
Ashleen L. Crowe ◽  
Taylor McClenaghan ◽  
Helen McAneney ◽  
Amy Jayne McKnight
Keyword(s):  
Rare Disease ◽  
General Practitioners ◽  
Support Groups ◽  
Rare Diseases ◽  
Exploratory Study ◽  
Online Survey ◽  
Treatment Options ◽  
Healthcare Delivery ◽  
Disease Awareness ◽  
Specialist Services

AbstractBackgroundGeneral Practitioners (GPs) play an important role in healthcare delivery for people living with a rare disease and their families. Managing long-term multisystem diseases that often have no cure and sub-optimal treatment options can be extremely challenging.AimTo gain an understanding of GP’s perception and experience of rare diseases.Design and SettingThis is an exploratory study with GPs from Northern Ireland.MethodAn online survey was hosted within SmartSurvey, available for 6 weeks in early 2019, which queried: GPs career to date, interactions with rare disease patients, challenges faced, the exchange of information with patients, priorities for the future, support for such patients and finally training.ResultsSixty-six GPs engaged with the survey with 15 completing the survey. Many frustrations were mentioned by GPs when caring for such patients including finding a diagnosis, lack of specialist services and lack of awareness. Seventy-nine percent of GPs responding did not feel adequately trained to care for patients with a rare disease, while 93% were interested in undertaking training to enable them to improve their care for rare disease patients.ConclusionMore effective and convenient ‘rare disease’ focused training programs would help GPs manage patients with rare diseases. Enabling efficient, effective communication between GPs and individual medical specialists is of paramount importance to give GPs access to information on how to effectively manage patients living with a rare disease. Awareness should be raised for effective support mechanisms such as charities and support groups for rare disease patients.How this fits inMany GPs have reported feeling overwhelmed when caring for rare disease patients. Their lack of knowledge forces them to turn to the internet but finding reliable information is often difficult. This study acknowledges the difficult task GPs face when caring for this population and highlights the need for training development, improved communication, and better awareness.

scholarly journals Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Julie McMullan ◽  
Ashleen L. Crowe ◽  
Caitlin Bailie ◽  
Kerry Moore ◽  
Lauren S. McMullan ◽  
...  
Keyword(s):  
Northern Ireland ◽  
Rare Disease ◽  
Rare Diseases ◽  
Health Professionals ◽  
Online Survey ◽  
Essential Element ◽  
Future Research ◽  
Structured Interviews ◽  
Collaborative Groups ◽  
Related Information

Abstract Background Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018–2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI). Methods This study had 2 stages. Stage 1 was an online survey and stage 2 involved semi-structured interviews both with rare disease collaborative groups in Northern Ireland. The surveys and interviews were used to locate existing resources as well as identify gaps where the development of further resources would be appropriate. Results Ninety-nine rare disease collaborative groups engaged with the survey with 31 providing detailed answers. Resources such as information, communication, ‘registries’, online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective information and communication, training for health professionals, online presence, support for carers, and involvement in research. Conclusions All rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs, and suggests approaches to improve rare disease support.

scholarly journals Good communication is critical to supporting people living and working with a rare disease: current rare disease support perceived as inadequate

2020 ◽  
Author(s):  
Julie McMullan ◽  
Ashleen L. Crowe ◽  
Caitlin Bailie ◽  
Kerry Moore ◽  
Lauren S. McMullan ◽  
...  
Keyword(s):  
Northern Ireland ◽  
Rare Disease ◽  
Rare Diseases ◽  
Health Professionals ◽  
Online Survey ◽  
Essential Element ◽  
Future Research ◽  
Structured Interviews ◽  
Collaborative Groups ◽  
Information And Communication

AbstractBackgroundMany people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018-2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI).ResultsNinety-nine participants engaged with the survey with 31 respondents providing detailed answers. Resources such as information, communication, ‘registries’, online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective: information and communication, training for health professionals, online presence, support for carers, and involvement in research.ConclusionsAll rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. Due to the unique role a carer has in the life of a person with a rare disease it is vital that their voice is heard and their needs are listened to. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs in service provision, and suggests approaches to improve rare disease support prioritising improved information and communication provision, improved access to services, and tailored support for carers of people with a rare disease.

scholarly journals Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mercedes Guilabert ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Optimal Care ◽  
Cross Sectional ◽  
Patient Reported ◽  
Mean Time

Abstract Objective To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience). Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2–3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services. Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

scholarly journals Older and Wiser? The Need to Reexamine the Impact of Health Professionals Age and Experience on Competency-Based Practices

2021 ◽  
Vol 7 ◽  
pp. 237796082110290
Author(s):  
Jing Xu ◽  
Kristen Hicks-Roof ◽  
Chloe E. Bailey ◽  
Hanadi Y. Hamadi
Keyword(s):  
Health Professionals ◽  
Online Survey ◽  
Evidence Based Practice ◽  
Core Competencies ◽  
Healthcare Services ◽  
Interdisciplinary Teams ◽  
Evidence Based ◽  
Health Providers ◽  
Cross Sectional ◽  
The Impact

Introduction Delivery of healthcare services makes up a complex system and it requires providers to be competent and to be able to integrate each of the institute of medicine’s (IOM) 5 core competencies into practice. However, healthcare providers are challenged with the task to be able to understand and apply the IOM core competencies into practice. Objective The purpose of the study was to examine the factors that influence health professional’s likelihood of accomplishing the IOM core competencies. Methods A cross-sectional study design was used to administer a validated online survey to health providers. This survey was distributed to physicians, nursing professionals, specialists, and allied healthcare professionals. The final sample included 3,940 participants who completed the survey. Results The study findings show that younger health professionals more consistently practice daily competencies than their older counterparts, especially in the use of evidence-based practice, informatics, and working in interdisciplinary teams. Less experienced health professionals more consistently applied quality improvement methods but less consistently used evidence-based practice compared to their more experienced counterparts. Conclusion There is a need to understand how health professionals’ age and experience impact their engagement with IOM’s core competencies. This study highlights the need for educational resources on the competencies to be tailored to health providers’ age and experience.

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.

scholarly journals Influenza Vaccination in Coronavirus Times: Intention to Be Vaccinated by Primary Care Professionals in Central Catalonia (VAGCOVID)

2021 ◽  
Author(s):  
Raquel Muñoz-Miralles ◽  
Anna Bonet-Esteve ◽  
Anna Rufas Cebollero ◽  
Xavier Pelegrin Cruz ◽  
Josep Vidal Alaball
Keyword(s):  
Primary Care ◽  
At Risk ◽  
Influenza Vaccination ◽  
Vaccination Coverage ◽  
Health Professionals ◽  
Online Survey ◽  
Health Workers ◽  
Cross Sectional ◽  
History Of ◽  
Primary Care Professionals

Abstract BackgroundInfluenza vaccination is the main measure of prevention against the epidemic flu, which annually produces a significant increase in the pressure on healthcare systems, in addition to influencing the absenteeism of health workers. Although it is recommended that health professionals be vaccinated, their vaccination coverage is low. The lack of knowledge about the evolution of influenza in the context of the SARS-CoV-2 coronavirus pandemic led to the continued recommendation of influenza vaccination to people at risk and to professionals. The aim of the study is to determine the intention to vaccinate against seasonal flu of health professionals in the 2020-21 campaign in the context of the SARS-CoV-2 pandemic, and to analyse the factors that influence it.MethodsCross-sectional study through a structured online survey aimed at Primary Care professionals in the region of central Catalonia.ResultsA total of 610 participants responded to the survey, 65.7% of whom intended to be vaccinated against the flu in this campaign and 11.1% did not yet know or did not answer. The intention to be vaccinated against flu is associated with the professional category, the years of professional practice, the fact of making face-to-face guards, and the perception of the risk of suffering from flu. It is also related to a history of influenza vaccination in the previous year and to having been vaccinated on another occasion. The profile of professionals who intend to be vaccinated against flu includes professionals with a history of vaccination, who were on duty and perceived that their staff were at risk of becoming ill with flu.ConclusionsDuring the SARS-CoV-2 pandemic, many professionals show a clear intention to get vaccinated against the flu, but there are still some who doubt it. In order to improve influenza vaccination coverage among health professionals, it is necessary to design strategies aimed at professionals who are hesitant or reluctant to vaccination.

Sign in / Sign up

Export Citation Format

Share Document