METHODS: A series of online meetings were conducted by the lead author (PK) and the SMART Recovery International Executive Officer (KM), with representatives from the SMART Recovery National Offices in the Ireland (DO), United States (MR), Australia (RM), and Denmark (BSH, DA), and the United Kingdom (AK). The meetings focused on discussing the impacts of COVID-19 on SMART Recovery in each of the regions.
RESULTS: As a result of restrictions to prevent the transmission of COVID-19, the vast majority of SMART Recovery face-to-face meetings were required to cease globally. To ensure people still had access to AOD mutual support, SMART Recovery rapidly scaled up the provision of online groups. This upscaling has increased the number of groups in countries that had previously provided a limited number of online meetings (i.e., United States, England, Australia), and has meant that online groups are available for the first time in Denmark, Ireland, Hong Kong, Spain, Malaysia and Brazil.
DISCUSSION: Whilst the urgent and rapid expansion of online groups was required to support people during the pandemic, it has also created an opportunity for the ongoing availability of online mutual support post-pandemic. The challenge for the research community is to critically evaluate the online delivery of mutual support groups, to better understand the mechanisms through which they may work, and to help understand the experience of people accessing the groups.
METHODS: Using thematic analysis based on three frameworks, 120 posted messages and comments were examined from MyEndosis Facebook group-a support group for women with endometriosis from January to July 2014.
RESULTS: Results showed the issues discussed were (a) personal struggles, (b) medication and treatment, (c) alternative medication, (d) side effects, and (e) medication recommended by doctors. While using this social medium, users found (a) emotional support, (b) esteem support, (c) information support, (d) network support, and (e) tangible assistance in their engagement with others.
CONCLUSION: The analysis suggested that users' interactions were structured around information, emotion, and community building, which many doctors and nurses were not aware of. The group was shaped as a social network where peer users share social support, cultivate companionship, and exert social influence.
AIMS: To understand the use of online support groups by patients with bipolar disorder as part of a larger project about information seeking.
METHODS: The results are based on a one-time, paper-based anonymous survey about information seeking by patients with bipolar disorder, which was translated into 12 languages. The survey was completed between March 2014 and January 2016 and included questions on the use of online support groups. All patients were diagnosed by a psychiatrist. Analysis included descriptive statistics and general estimating equations to account for correlated data.
RESULTS AND CONCLUSIONS: The survey was completed by 1222 patients in 17 countries. The patients used the Internet at a percentage similar to the general public. Of the Internet users who looked online for information about bipolar disorder, only 21.0% read or participated in support groups, chats, or forums for bipolar disorder (12.8% of the total sample). Given the benefits reported in prior research, clarification of the role of online support groups in bipolar disorder is needed. With only a minority of patients using online support groups, there are analytical challenges for future studies.
METHODS: The authors conducted a qualitative study using in-depth interviews and focus group discussions with 98 participants representing 23 LMICs in Eastern Europe, Central Asia, East and Southern Africa, and Latin America.
RESULTS: Despite geographic, cultural, and socioeconomic differences, the common themes that emerged from the data across the 3 regions are strikingly similar: trust, knowledge gaps, stigma, sharing experiences, and sustainability. The authors identified common facilitators (training/education, relationship building/networking, third-party facilitators, and communication) and barriers (mistrust, stigma, organizational fragility, difficulty translating HIC strategies) to establishing trust, collaboration, and advancing cancer advocacy efforts. To the authors' knowledge, the current study is the first to describe the role that coalitions and regional networks play in advancing breast cancer advocacy in LMICs across multiple regions.
CONCLUSIONS: The findings of the current study corroborate the importance of investing in 3-way partnerships between CSOs, political leaders, and health experts. When provided with information that is evidence-based and resource appropriate, as well as opportunities to network, advocates are better equipped to achieve their goals. The authors propose that support for CSOs focuses on building trust through increasing opportunities for engagement, disseminating best practices and evidence-based information, and fostering the creation of platforms for partnerships and networks.
METHODS: The translation of the UTBAS scales into Japanese (UTBAS-J) was completed using the standard forward-backward translation process, and was administered to 130 Japanese adults who stutter. To validate the UTBAS-J scales, scores for the Japanese and Australian cohorts were compared. Spearman correlations were conducted between the UTBAS-J and the Modified Erickson Communication Attitude scale (S-24), the self-assessment scale of speech (SA scale), and age. The test-retest reliability and internal consistency of the UTBAS-J were assessed. Independent t-tests were conducted to evaluate the differences in the UTBAS-J scales according to gender, speech treatment experience, and stuttering self-help group participation experience.
RESULTS: The UTBAS-J showed good test-retest reliability, high internal consistency, and moderate to high significant correlations with S-24 and SA scale. A weak correlation was found between the UTBAS-J scales with age. No significant relationships were found between UTBAS-J scores, gender and speech treatment experience. However, those who participated in the stuttering self-help group demonstrated lower UTBAS-J scores than those who did not.
CONCLUSION: Given the current scarcity of clinical assessment tools for adults who stutter in Japan, the UTBAS-J holds promise as an assessment tool and outcome measure for use in clinical and research environments.
Objectives: This qualitative study examines factors affecting the adherence to HIV/AIDS treatment among patients with HIV/AIDS at a local hospital in Malaysia.
Methods: The data from purposefully selected patients were collected by in-depth interviews using a pretested interview guide. Saturation was reached at the 13th interview. All interviews were audio-taped and transcribed verbatim for analysis using thematic content analysis.
Results: Fear and stigma of perceived negative image of HIV diagnosis, lack of disease understating, poor support from the community, and perceived severity or the treatment side effects were among the reasons of nonadherence. Appropriate education and motivation from the doctors and reduction in pill burden were suggested to improve adherence.
Conclusion: Educational interventions, self-management, and peer and community supports were among the factors suggested to improve adherence. This necessitates uncovering efficient ways to boost doctor-patient communication and recognizing the role of support group for the social and psychological well-being of the patients.
DESIGN: Qualitative study with a quantitative component.
SETTING: Pediatric and adolescent gynecology unit at Universiti Kebangsaan Malaysia Medical Centre, Malaysia.
PARTICIPANTS: Twelve women with MRKH.
INTERVENTIONS: Face-to-face interview and short questionnaire.
MAIN OUTCOME MEASURES: Thematic analysis was used to understand participants' experiences.
RESULTS: There were 7 themes identified: (1) delayed diagnoses; (2) doctors' roles and attitudes; (3) gender identity; (4) family and society's response; (5) reaction toward infertility; (6) managing sexual intimacy; and (7) coping mechanisms. Several participants consulted their physicians regarding their primary amenorrhea at an opportunistic setting. When they were referred to the gynecologists, they were dismayed at the lack of information given. The term, "MRKH" plays an important role to ease information-seeking. Participants felt that the doctors were insensitive toward them. Mental illness is a significant complication of MRKH. All participants acknowledged that infertility was the hardest part of the condition. The importance of blood lineage affects their outlook on childbearing options. Some were afraid of sexual intimacy and worried that they would not be able to satisfy their partners. Participants gained support and bonded with their counterparts in the MRKH support group.
CONCLUSION: A multidisciplinary approach including medical, psychological, and social support is essential for the management of MRKH. Adequate information and sexual education plays the utmost importance in preventing social-related complications of MRKH.