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1.
Ann Otol Rhinol Laryngol ; 133(8): 713-719, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38738670

RESUMO

OBJECTIVE: This study compared the utilization and outcomes of face-to-face (F2F) vestibular support groups and online support communities (OSC) for individuals with vestibular disorders. METHODS: We distributed a 31-question anonymous electronic survey through the Vestibular Disorders Association (VeDA) to F2F participants, categorizing user involvement in F2F, OSCs, or both and assessed impact on medical decision-making, psychosocial benefits, and goals achieved. RESULTS: The F2F cohort consisted of 97 individuals comprising primarily of non-Hispanic White women (mean age = 57 years, SD ± 14 years) with diagnoses including persistent postural-perceptual dizziness (19%), Meniere's disease (15%), and vestibular neuritis (13%). Most participants were diagnosed by an otolaryngologist (65%) and attended F2F meetings monthly or less frequently (78%). The OSC group comprised of 551 individuals, primarily of non-Hispanic White women, but was younger in age (mean age = 50 years, SD ± 13 years). OSC participants notably engaged more, with 36% participating on a daily basis and 32% multiple times a week. F2F participants were older (mean age 57 years vs 50 years, P < .001) and more commonly referred by medical professionals (22% F2F vs 6% OSC, P < .001). Both groups had similar achieved goals, including hearing from others with the same diagnosis (84% vs 89%, P > .05) and similar impact on medical decision-making (75% vs 78%, P > .05). More F2F participants reported increased development of coping skills (79% F2F vs 69% OSC, P = .037). OSC participants typically found the group via an online search (75%), compared to 51% for F2F. OSC participants had higher daily engagement (36%) compared to F2F (1%). CONCLUSION: F2F users are older and more commonly referred by medical professionals. Despite less frequent engagement, F2F participants reported similar influences on achieved goals, medical decision-making, and impact on psychosocial benefits. These findings highlight the importance of both F2F and OSC support groups for individuals with vestibular disorders.


Assuntos
Grupos de Autoajuda , Doenças Vestibulares , Humanos , Pessoa de Meia-Idade , Feminino , Masculino , Doenças Vestibulares/psicologia , Doenças Vestibulares/diagnóstico , Adulto , Idoso , Inquéritos e Questionários , Internet
2.
J Med Internet Res ; 25: e46858, 2023 12 13.
Artigo em Inglês | MEDLINE | ID: mdl-38090796

RESUMO

BACKGROUND: Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. OBJECTIVE: This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. RESULTS: In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. CONCLUSIONS: There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.


Assuntos
Cuidadores , Grupos de Autoajuda , Adulto , Humanos , Feminino , Cuidadores/psicologia , Apoio Social , Serviços de Saúde , Comunicação , Família/psicologia
3.
Discourse Soc ; 34(2): 255-270, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37829665

RESUMO

COVID-19 has become a mental health pandemic. The impact on vulnerable demographic groups has been particularly severe. This paper focuses on women in employment in Hong Kong who have had to balance remote work and online schooling for over 2 years. Using semi-ethnography and theme-oriented discourse analysis, we examine 200 threads that concern members' mental health on a popular Facebook support group for mothers. We demonstrate that mental health messages are typically framed as 'troubles talk'. Other support group members actively align with a trouble-teller through 'caring responses', namely expressions of empathy and sympathy. These are realized through assessments of the trouble-teller's experience, reports of similar experiences; expressions of compassion and advice-giving. Mental health talk online is heavily mitigated, nevertheless the medium provides a space for expressing mental health troubles and providing informal psychosocial support. We advocate the importance of microanalytic discourse studies for mental health research to get insights into people's lived experiences during the pandemic.

4.
Int J Behav Med ; 2023 Aug 07.
Artigo em Inglês | MEDLINE | ID: mdl-37548949

RESUMO

BACKGROUND: The purpose of this study was to explore whether a sense of collective or shared group identity was developed in one established online social support group for family caregivers and, if so, what did group identification mean for the group members and how was this cultivated in the group. METHODS: Eighteen semi-structured interviews were carried out with members of a family caregiver online support group in Ireland. Inductive and deductive reflexive thematic analysis drawing on the social identity approach (SIA) generated four main themes and several related subthemes. RESULTS: The first main theme generated was The group are a Tribe and the Tribe gets it, with subthemes: Invisibility as a common experience, my Tribe understands I am more than just a carer and Just being part of the Tribe can be enough. The second main theme generated was the Tribe is a lifeline and life-changing, with related subthemes: Our connection relieves experiences of loneliness and social isolation and Sharing knowledge, experience and support made me feel visible. The third and fourth main themes generated were The leadership of group moderators helped create the Tribe identity and Lessons that can be learnt. These findings are discussed in relation to the social identity approach, social isolation and loneliness. CONCLUSIONS: We concluded that group identity can be cultivated through considered, active and balanced moderation, creating a safe, welcoming and supportive space where family caregivers are able to have fun and seek information, advice and emotional support, which helps relieve loneliness and social isolation.

6.
JMIR Nurs ; 5(1): e36167, 2022 Aug 18.
Artigo em Inglês | MEDLINE | ID: mdl-35980741

RESUMO

BACKGROUND: Online support groups (OSGs) are distance-delivered, easily accessible health interventions offering emotional, informational, and experience-based support and companionship or network support for caregivers managing chronic mental and physical health conditions. OBJECTIVE: This study aimed to examine the relative contribution of extraversion, agreeableness, neuroticism, positive attitudes toward OSGs on social networking sites, and typical past OSG use patterns in predicting perceived OSG benefit in an OSG for parents and caregivers of children with neurodevelopmental disorders. METHODS: A mixed methods, longitudinal design was used to collect data from 81 parents across Canada. Attitudes toward OSGs and typical OSG use patterns were assessed using the author-developed Attitudes Toward OSGs subscale (eg, "Online support groups are a place to get and give emotional support") and Past Behaviors in OSGs subscale (eg, "How often would you typically comment on posts?") administered at baseline-before OSG membership. The personality traits of extraversion, agreeableness, and neuroticism were assessed at baseline using the Ten-Item Personality Inventory. Perceived OSG benefit was assessed using the author-developed Perceived OSG Benefit scale (eg, "Overall, did you feel supported by other members in this group?"), administered 2 months after the initiation of OSG membership. RESULTS: A hierarchical regression analysis found that extraversion was the only variable that significantly predicted perceived OSG benefit (R2=0.125; P<.001). CONCLUSIONS: The key suggestions for improving future OSGs were facilitating more in-depth, customized, and interactive content in OSGs.

7.
J Med Internet Res ; 24(7): e27648, 2022 07 26.
Artigo em Inglês | MEDLINE | ID: mdl-35881456

RESUMO

BACKGROUND: Online support groups provide opportunities for individuals affected by HIV and AIDS to seek information, advice, and support from peers. However, whether and how engagement with online support groups helps individuals affected by HIV and AIDS remains unclear, as does the nature of the evidence on this topic. OBJECTIVE: This scoping review sought to explore whether engagement with HIV and AIDS-related online support groups benefits members in terms of psychosocial well-being and illness management, whether members experienced any negative aspects of these groups, and what types of social support are exchanged within HIV and AIDS-related online support groups. METHODS: A scoping review of English-language articles (including both qualitative and quantitative studies) was undertaken using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The databases searched included MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials), and Scopus. Key findings were synthesized using a narrative and thematic approach. RESULTS: A total of 22 papers met the inclusion criteria from an initial pool of 3332 abstracts. These papers included 23% (5/22) quantitative studies, 9% (2/22) mixed methods studies, and 68% (15/22) qualitative studies published between 2007 and 2019. Cross-sectional evidence suggests that engagement with HIV and AIDS-related online support groups is empowering for members and may lead to a range of psychosocial benefits. Furthermore, qualitative evidence suggests that these groups provide an opportunity to connect with similar people and share experiences. This can help improve self-worth, reduce stigma, facilitate improved illness management, and gain greater confidence when interacting with health professionals. However, online support groups are not without their limitations as qualitative evidence suggests that users may encounter examples of interpersonal conflict between members as well as be exposed to challenging content. Finally, HIV and AIDS-related online support groups are avenues through which individuals can solicit support, most commonly informational or emotional. CONCLUSIONS: HIV and AIDS-related online support groups may have some benefits for members, particularly in terms of providing social support. There is a need for a systematic review of this literature that includes an assessment of the methodological quality of the available evidence.


Assuntos
Infecções por HIV , Grupos de Autoajuda , Estudos Transversais , Infecções por HIV/terapia , Humanos , Grupo Associado , Apoio Social
8.
JMIR Cancer ; 8(3): e35893, 2022 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-35904877

RESUMO

BACKGROUND: The negative psychosocial impacts of cancer diagnoses and treatments are well documented. Virtual care has become an essential mode of care delivery during the COVID-19 pandemic, and online support groups (OSGs) have been shown to improve accessibility to psychosocial and supportive care. de Souza Institute offers CancerChatCanada, a therapist-led OSG service where sessions are monitored by an artificial intelligence-based co-facilitator (AICF). The AICF is equipped with a recommender system that uses natural language processing to tailor online resources to patients according to their psychosocial needs. OBJECTIVE: We aimed to outline the development protocol and evaluate the AICF on its precision and recall in recommending resources to cancer OSG members. METHODS: Human input informed the design and evaluation of the AICF on its ability to (1) appropriately identify keywords indicating a psychosocial concern and (2) recommend the most appropriate online resource to the OSG member expressing each concern. Three rounds of human evaluation and algorithm improvement were performed iteratively. RESULTS: We evaluated 7190 outputs and achieved a precision of 0.797, a recall of 0.981, and an F1 score of 0.880 by the third round of evaluation. Resources were recommended to 48 patients, and 25 (52%) accessed at least one resource. Of those who accessed the resources, 19 (75%) found them useful. CONCLUSIONS: The preliminary findings suggest that the AICF can help provide tailored support for cancer OSG members with high precision, recall, and satisfaction. The AICF has undergone rigorous human evaluation, and the results provide much-needed evidence, while outlining potential strengths and weaknesses for future applications in supportive care.

9.
Telemed J E Health ; 2022 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-35324322

RESUMO

Introduction: This study asked: (1) How does digital literacy influence one's decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual's decision to participate in a trial? and (3) How can a consent process be tailored around an individual's digital literacy level? Methods: We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study. Results A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial. Conclusions: We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.

10.
Am J Obstet Gynecol ; 226(4): 547.e1-547.e14, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34752735

RESUMO

BACKGROUND: Social media is increasingly becoming a health resource for people suffering from complex and debilitating health conditions. A comprehensive understanding of how and why social media and the Internet are used among patients with chronic gynecologic pain will allow for the intentional development and incorporation of web-based tools into patient care plans. OBJECTIVE: This study aimed to determine whether gynecologic patients with pain are more likely to use social media and the Internet to understand and manage their condition than those without pain. The survey was designed to explore how gynecologic patients with and without pain use and interact with social media and other web-based health resources and the clinical, personal, and demographic factors influencing these behaviors. STUDY DESIGN: Patients presenting with a new complaint to a gynecologist at 1 of 6 Fellowship in Minimally Invasive Gynecologic Surgery-affiliated hospital systems were screened, consented, and assigned to pain and no-pain groups. Participants were surveyed about social media and Internet use, symptoms, bother, physician selection, motivation, trust, and demographic information. Survey responses were compared using the Fisher exact tests, odds ratios, and risk ratios from standard tabular analysis, univariate or multivariate tests of means, and regression analyses, as appropriate. RESULTS: Of 517 participants included in the study, 475 (92%) completed the survey, 328 (69.1%) with pain and 147 (30.9%) without pain. Study participants in the pain group reported more than double the odds of using social media than those without pain (37.8% vs 19.7%; odds ratio, 2.47; 95% confidence interval, 1.54-3.96) and triple the odds of using the Internet (88.4% vs 69.4%; odds ratio, 3.37; 95% confidence, 2.04-5.56) to understand or manage their condition. Participants with pain were more likely than those without pain to engage in social media at a higher level (3.5 vs 1.7 on a scale of 0 to 10; P<.0001), be motivated by interpersonal elements of online engagement (Hotelling's T2=37.3; P<.0001), prefer an interactive component to their online health resource (35.6% vs 24.3%; risk ratio, 1.46; 95% confidence interval, 1.00-2.20; P=.0433), be influenced by others in their choice of a gynecologist (0.37 vs 0.32 on a scale of 0 to 1; P=.009), use social media as a coping tool (38.3% vs 17%; P=.0001), trust information found on social media (31.4% vs 16.7%; P=.0033), and trust other women with the same condition, informal health resources, and personal sources more and doctors and formal health resources less (P=.0083). Participants in both groups reported higher levels of social media engagement with higher levels of symptom bother (28% increase in engagement with every doubling of bother level (P<.0001). CONCLUSION: Patients with gynecologic pain were more likely than those without pain to use social media and the Internet to understand and manage their condition. Patients with pain engaged in and trusted social media at a higher level, with engagement rising directly with bother level.


Assuntos
Mídias Sociais , Feminino , Humanos , Internet , Dor Pélvica/terapia , Inquéritos e Questionários
11.
Front Glob Womens Health ; 2: 773921, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34957466

RESUMO

The increase in women's drinking is one of the most prominent trends in alcohol consumption in the UK in recent history, possibly exacerbated by COVID-19 lockdown measures. Higher rates of drinking are associated with substantial economic, health, and social costs. However, women are less likely to seek treatment for Alcohol Use Disorder (AUD) than men and have less successful treatment outcomes from traditional treatment paths, such as 12-step programs and in-patient care. Female heavy drinkers may also experience particular forms of gendered stigma that affect their experiences of addiction and recovery and their desire or ability to access these more "traditional" services. This review provides an overview of existing qualitative and quantitative research regarding online sobriety communities that are predominantly utilised by women, such as non-12-step alcohol online support groups (AOSGs) and temporary abstinence initiatives (TAIs). This is a small-but expanding-body of literature emerging as "sober curiosity" and "mindful drinking" are trending in Western contexts such as the UK, particularly amongst young women who do not identify with traditional, binary recovery language such as "alcoholic" and "addict." This review highlights the gaps in research and concludes that further research regarding these new treatment pathways, and women's experiences when utilising them, must be conducted to provide more evidence-based options for women who want to address problematic drinking. Public health bodies could also learn more effective strategies from these innovative solutions to reduce alcohol consumption generally.

12.
J Clin Med ; 10(15)2021 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-34362170

RESUMO

Irish society went into one of the most stringent lockdowns in March 2020 due to the COVID-19 pandemic, and barring a few weeks, remains highly restricted at time of writing. This has produced a wide range of challenges for those affected by eating disorders, as well as treatment services and Bodywhys, The Eating Disorders Association of Ireland. Current research indicates that COVID-19 has impacted across three key areas-the experience of those with an eating disorder, the experience of service provision, and the impact on the family situation. Drawing on monitoring and evaluation data gathered by Bodywhys, this paper details the challenges faced by those affected by eating disorders in Ireland and how the organisation responded to these challenges, providing support in various forms to people with eating disorders and their families.

13.
BMC Health Serv Res ; 21(1): 688, 2021 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-34253211

RESUMO

BACKGROUND: For people with Type 2 diabetes (T2D), lifestyle changes may be the most effective intervention. Online groups for people with diabetes holds a great potential to support such changes. However, little is known about the association between participation in online groups and lifestyle changes based on internet information in people with T2D. The aim of this study was to investigate the association between self-reported lifestyle changes and participation in online groups in people with T2D. METHODS: We used e-mail survey data from 1,250 members of The Norwegian Diabetes Association, collected in 2018. Eligible for analyses were the 540 respondents who reported to have T2D. By logistic regressions we studied the association between self-reported lifestyle changes and participation in online groups. Analyses were adjusted for gender, age, education, and time since diagnosis. RESULTS: We found that 41.9 % of the participants reported lifestyle changes based on information from the internet. Only 6 % had participated in online groups during the previous year. Among those with a disease duration of less than 10 years, 56.0 % reported lifestyle changes, whereas 33.4 % with a disease duration of 10 years or more did so. The odds for lifestyle changes were more than doubled for those who participated in online groups. People who had been diagnosed with diabetes for less than 10 years were significantly more likely to change their lifestyle compared to those with a longer disease duration. CONCLUSIONS: Lifestyle changes based on information from the internet among people with T2D are associated with participation in online groups. Lifestyle changes are also associated with time since diagnosis, making the first years after a T2D diagnosis particularly important for lifestyle interventions. People with T2D, web site developers, online group moderators, health care services, and patient organisations should be aware of this important window for lifestyle change, and encourage participation in online groups.


Assuntos
Diabetes Mellitus Tipo 2 , Estudos Transversais , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/terapia , Escolaridade , Humanos , Internet , Estilo de Vida , Inquéritos e Questionários
14.
Rev. enferm. Inst. Mex. Seguro Soc ; 29(2): 54-56, 01-abr-2021.
Artigo em Espanhol | LILACS, BDENF - enfermagem (Brasil) | ID: biblio-1354764

RESUMO

El cáncer de mama es el cáncer más frecuente en las mujeres, con un 25.2%, y se presenta tanto en los países desarrollados como en los países en desarrollo. Su incidencia desafortunadamente continúa en aumento pese a las campañas de concientización en todo el mundo; por ejemplo, durante todo el mes de octubre se promueven la sensibilización y la detección oportuna. Todos los esfuerzos siempre serán bienvenidos a fin de lograr el máximo bienestar de las pacientes, y es por eso que desde la década de 1990 surgieron numerosos grupos de apoyo con la finalidad de proporcionar soporte a las mujeres con diagnóstico de cáncer de mama, en los que se identificó que había múltiples beneficios tanto emocionales como fisiológicos, además de favorecer el afrontamiento de su enfermedad y con efectos positivos en cuanto a la supervivencia. Y son justo los tópicos que se abordan en los grupos de apoyo los que pueden ayudar no solo a las pacientes, sino también a sus familias, a su red de apoyo y en particular a su cuidador primario, quien desempeña un rol fundamental en el proceso que llevará la paciente a lo largo de su tratamiento médico.


Breast cancer is the most frequent cancer in women with 25.2% and occurs in both developed and developing countries, its incidence unfortunately continues to increase despite awareness campaigns worldwide, for example during throughout the month of October awareness and timely detection are promoted. All efforts will always be welcome in order to achieve the maximum well-being of patients, and that is why since the 1990s a large number of support groups emerged worldwide, with the purpose of providing support to women with diagnosis. of breast cancer, where it was identified that there were multiple benefits both emotional and physiological, in addition to favoring the coping of their disease with positive effects in terms of survival. And it is precisely the topics that are addressed in the support groups that can help, not only the patients but also their families, their support network and in particular their primary caregiver. Who plays a fundamental role in the process that the patient will take throughout her medical treatment.


Assuntos
Humanos , Feminino , Grupos de Autoajuda , Mulheres , Neoplasias da Mama , Conscientização , Sobrevida , Adaptação Psicológica , Cuidadores
15.
Saudi J Med Med Sci ; 9(1): 51-58, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33519344

RESUMO

BACKGROUND: Social media can be a cost-effective instant tool for exchanging health information among those with chronic diseases. However, few studies have analyzed the nexus between chronic disease and patients' use of the internet for health-related purposes. OBJECTIVE: The objective of this study is to determine if chronic disease patients in the United States use social media platforms to share health information and/or join groups of similar condition. MATERIALS AND METHODS: This cross-sectional study conducted a secondary analysis of the Health Information Trends Survey dataset 5 (cycle 1 of 2017 and cycle 2 of 2018) (N = 6650), which is nationally representative of American adults. A series of chi-square tests was carried to examine the association between using social media by chronic disease patients and (a) sharing health information and (b) participating in relevant health groups. Logistic regression analysis was used to determine significant findings. RESULTS: In terms of sharing health information on social media sites, those who were aged 18-49 years (P < 0.0001) and underweight (P = 0.04) were more likely to share health information on social media, while males were less likely to do so (P < 0.0001). In terms of joining relevant health groups on social media, predictors were being aged 35-49 years (P = 0.008), having a Bachelor's or postbaccalaureate degree (P < 0.02) and having depression or anxiety disorder (P = 0.004); males were less likely to join such groups (P = 0.0004). CONCLUSION: Individuals with chronic conditions, except depression or anxiety disorder, were not likely to participate in social media support groups. Future studies should explore how social media can be used to effectively engage those with chronic diseases, which may assist in disease management.

16.
JMIR Res Protoc ; 10(1): e21453, 2021 Jan 07.
Artigo em Inglês | MEDLINE | ID: mdl-33410754

RESUMO

BACKGROUND: Cancer and its treatment can significantly impact the short- and long-term psychological well-being of patients and families. Emotional distress and depressive symptomatology are often associated with poor treatment adherence, reduced quality of life, and higher mortality. Cancer support groups, especially those led by health care professionals, provide a safe place for participants to discuss fear, normalize stress reactions, share solidarity, and learn about effective strategies to build resilience and enhance coping. However, in-person support groups may not always be accessible to individuals; geographic distance is one of the barriers for access, and compromised physical condition (eg, fatigue, pain) is another. Emerging evidence supports the effectiveness of online support groups in reducing access barriers. Text-based and professional-led online support groups have been offered by Cancer Chat Canada. Participants join the group discussion using text in real time. However, therapist leaders report some challenges leading text-based online support groups in the absence of visual cues, particularly in tracking participant distress. With multiple participants typing at the same time, the nuances of the text messages or red flags for distress can sometimes be missed. Recent advances in artificial intelligence such as deep learning-based natural language processing offer potential solutions. This technology can be used to analyze online support group text data to track participants' expressed emotional distress, including fear, sadness, and hopelessness. Artificial intelligence allows session activities to be monitored in real time and alerts the therapist to participant disengagement. OBJECTIVE: We aim to develop and evaluate an artificial intelligence-based cofacilitator prototype to track and monitor online support group participants' distress through real-time analysis of text-based messages posted during synchronous sessions. METHODS: An artificial intelligence-based cofacilitator will be developed to identify participants who are at-risk for increased emotional distress and track participant engagement and in-session group cohesion levels, providing real-time alerts for therapist to follow-up; generate postsession participant profiles that contain discussion content keywords and emotion profiles for each session; and automatically suggest tailored resources to participants according to their needs. The study is designed to be conducted in 4 phases consisting of (1) development based on a subset of data and an existing natural language processing framework, (2) performance evaluation using human scoring, (3) beta testing, and (4) user experience evaluation. RESULTS: This study received ethics approval in August 2019. Phase 1, development of an artificial intelligence-based cofacilitator, was completed in January 2020. As of December 2020, phase 2 is underway. The study is expected to be completed by September 2021. CONCLUSIONS: An artificial intelligence-based cofacilitator offers a promising new mode of delivery of person-centered online support groups tailored to individual needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/21453.

17.
Int J Audiol ; 59(11): 850-858, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32522055

RESUMO

Objective: Better understanding of the decision-making process for bone-anchored hearing aid (BAHA) candidates has been identified by clinicians as a research priority. This study aimed to understand experiences and perceptions of BAHA candidates and users who use online support groups.Design: One thousand posts retrieved from a public UK-based online support group were thematically analysed.Study sample: Messages were posted by 270 BAHA users and candidates.Results: Individuals used the online group to obtain information about BAHAs and support for decision-making regarding accepting BAHA surgery and wearing a percutaneous device. BAHA users evaluated the efficacy of the system, perceiving it to be highly effective in improving their hearing. The BAHA influenced individuals' self-image and impacted their social lives. Fears of surgery and post-implantation infections were regarded as challenges to be faced when choosing to accept implantation.Conclusions: BAHA candidates found the online support group useful in helping them to decide whether or not to proceed with surgery, and the personal experiences of BAHA users were predominantly positive. However, it is not clear to what extent such positive experiences are representative of BAHA users more generally, and candidates need to be aware of this when using these groups to support decision-making.


Assuntos
Auxiliares de Audição , Condução Óssea , Audição , Perda Auditiva Condutiva , Testes Auditivos , Humanos , Percepção , Grupos de Autoajuda , Resultado do Tratamento
18.
Patient Educ Couns ; 103(6): 1125-1133, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31901364

RESUMO

OBJECTIVE: Individuals in recovery for substance use disorders (SUDs) increasingly use online social support forums, necessitating research on how communicating through these forums can affect recovery. This study examines how giving and receiving support within an SUDs recovery forum predict substance use, and considers whether effects vary according to participants' self-efficacy. METHODS: We applied content analysis to 3440 messages that were posted by 231 participants in an online SUDs forum. Surveys assessed social support reception and substance use at three timepoints. We assessed relationships between giving and receiving support and substance use (risky drinking days, illicit drug use days), and the interactions between self-efficacy and social support in predicting substance use outcomes. RESULTS: Receiving more emotional support was associated with reduced illicit drug use at 6 and 12 months. For those with low self-efficacy, giving more emotional support predicted less risky drinking at month 12, whereas giving more informational support predicted more risky drinking at month 12. CONCLUSION: These results suggest conditional benefits of exchanging support in an online SUDs forum, depending upon type of support (informational versus emotional), the participants' role (giver or receiver), and their self-efficacy. PRACTICE IMPLICATIONS: We discuss implications for designing and using peer-to-peer support platforms.


Assuntos
Autoeficácia , Apoio Social , Transtornos Relacionados ao Uso de Substâncias , Doença Crônica , Feminino , Humanos , Internet , Masculino , Recidiva , Prevenção Secundária , Transtornos Relacionados ao Uso de Substâncias/psicologia
19.
Omega (Westport) ; 81(2): 272-297, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29580175

RESUMO

This study examined Swedish suicide bereaved individuals' use of different resources in their grief work and how they value these resources. The material consisted of a web-based survey, which was analyzed with quantitative methods. The results showed that the psychosocial ill-health was severe among the suicide bereaved participants and that a majority used digital resources in their grief work. The propensity to engage in online support groups or memorial websites was not predicted by the severity of psychosocial consequences following the suicide. However, multiple regressions showed that higher online support group activity predicted more satisfaction with current psychosocial health, while memorial websites seemed to have the opposite effect. This study not only indicates that some digital resources, for example, online support groups, may be an effective way of coping with grief related to suicide loss, but also suggests that memorial websites may increase rumination and in this way cause emotional distress.


Assuntos
Adaptação Psicológica , Luto , Suicídio , Sobreviventes/psicologia , Adolescente , Adulto , Idoso , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Grupos de Autoajuda , Inquéritos e Questionários , Suécia , Adulto Jovem
20.
J Broadcast Electron Media ; 64(2): 277-297, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33584002

RESUMO

As individuals increasingly write about their distressing experiences online, it is important to understand how perceived online audiences influence the effects of self-disclosure. In an experiment, participants wrote about recent breakups for online audiences purportedly varying in 1) whether they shared recent breakup experiences and 2) their ability to leave comments. Participants perceiving audiences with shared experience showed more cognitive processing in their writing and reported increased post-traumatic growth at follow-up than participants perceiving general audiences. Those anticipating comments wrote less about emotions than those who did not. Mechanisms accounting for the benefits of shared experience warrant further investigation.

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