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1.
J Med Internet Res ; 24(4): e35595, 2022 04 28.
Article in English | MEDLINE | ID: covidwho-1834186

ABSTRACT

BACKGROUND: In 2020 and 2021, people increasingly used the internet to connect socially and professionally. However, people with an acquired brain injury (ABI) experience challenges in using social media, and rehabilitation professionals have reported feeling underprepared to support them in its use. To date, no review of social media skills training to inform ABI rehabilitation has been conducted. OBJECTIVE: This scoping review aimed to examine research on interventions addressing social media skills and safety, with a focus on people living with health conditions; free web-based resources for the general public on social media skills training; and currently available online support groups for people with ABI. METHODS: An integrative scoping review was conducted, with a systematic search strategy applied in March and November 2020 across OvidSP (MEDLINE, AMED, PsycINFO, and Embase), Scopus, Web of Science, CINAHL, Google Scholar, Google, and Facebook. The data collected were critically appraised and synthesized to describe the key content and features of social media training resources. RESULTS: This review identified 47 peer-reviewed academic articles, 48 social media training websites, and 120 online support groups for people with ABI. A key recommendation was interactive training with practical components addressing cybersafety, how to use platforms, and how to connect with others. However, no social media training resources that were relevant and accessible for people with ABI were identified. CONCLUSIONS: Training resources to support people with ABI in safely using social media are limited. The key content to be addressed and the features to be incorporated into web-based social media training were determined, including the need for interactive training that is co-designed and safe and incorporates practical components that support people with ABI. These findings can be used to inform the development of web-based evidence-based support for people with ABI who may be vulnerable when participating in social media.


Subject(s)
Brain Injuries , Medicine , Social Media , Brain Injuries/rehabilitation , Humans , Self-Help Groups , Social Skills
2.
J Med Internet Res ; 24(5): e37674, 2022 05 20.
Article in English | MEDLINE | ID: covidwho-1809237

ABSTRACT

BACKGROUND: Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged, multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact patients with long COVID and their lived experiences of the condition. OBJECTIVE: The aim of this study is to explore the roles that online peer support groups take on and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures. METHODS: I conducted 11 semistructured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results by manually conducting thematic analysis. RESULTS: Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 5 themes and 13 subthemes through thematic analysis. The identified themes were as follows: (1) filling professional care gaps, (2) societal awareness, (3) engagement behavior, (4) diversity, and (5) social connections. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements. CONCLUSIONS: If used appropriately, online peer support groups could be immensely beneficial for patient well-being, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support's benefits within broader care structures.


Subject(s)
COVID-19 , Adult , COVID-19/complications , Humans , Peer Group , Qualitative Research , Self-Help Groups , United Kingdom
3.
Int J Environ Res Public Health ; 19(7)2022 03 29.
Article in English | MEDLINE | ID: covidwho-1785637

ABSTRACT

Individuals bereaved by suicide represent an important group in terms of postvention. While peer support groups are often accessed by those bereaved, few studies have examined their impact in terms of physical and mental health wellbeing. The aim of this study was to examine psychosocial outcomes of individuals attending suicide bereavement peer support groups in Ireland. Between August 2020 and June 2021, all members were invited to complete a survey, with new members also surveyed at three- and six-month follow-up, to examine changes in wellbeing, depressive symptoms and grief reactions. Results were analyzed using descriptive statistics and mixed linear regression models. The 75 participants were mostly female, with lower levels of overall wellbeing and a higher prevalence of depressive symptoms and suicidal ideation than the general population. Participants also reported high levels of social adjustment difficulties and grief reactions, which were more pronounced for those more recently bereaved. At follow-up (n = 28), a significant improvement in wellbeing and a reduction in grief reactions were found, adjusting for time since bereavement. Participants identified the groups as creating a safe space and providing a sense of belonging and hope. Notwithstanding the small number of participants at follow-up, these findings underline the enduring mental health challenges for those bereaved by suicide and provide further evidence for the role of peer support in postvention.


Subject(s)
Bereavement , Suicide , Female , Follow-Up Studies , Grief , Humans , Male , Self-Help Groups , Suicide/psychology
5.
J Subst Abuse Treat ; 138: 108732, 2022 Jul.
Article in English | MEDLINE | ID: covidwho-1670818

ABSTRACT

INTRODUCTION: During the COVID-19 pandemic, online video platforms became the primary mode of accessing substance use-focused mutual-help group meetings, which may persist after in-person meetings are available again. This study examined the characteristics (demographic, substance use and recovery, and mutual-help group use) of attendees of online recovery support meetings, and associations of online meeting attendance with substance use outcomes, using national data (without ensured representativeness) collected before the pandemic. METHODS: Data were from the Peer Alternatives in Addiction (PAL) Study of attendees of 12-step groups (e.g., Alcoholics Anonymous), Women for Sobriety (WFS), LifeRing Secular Recovery (LifeRing), and SMART Recovery (SMART). The baseline sample, collected in 2015 (pre-pandemic), was 647 adults with lifetime alcohol use disorder who were surveyed online at baseline and 6-month (81%) and 12-month follow-up (83%). RESULTS: At baseline, 62% (n = 402) had attended an online mutual-help group meeting in their lifetime, and 36% (n = 236) had done so in the past 30 days. Bivariate analyses found that online meeting attendance was more likely among women than men, younger than older participants, and participants with more recent alcohol and drug use, and less abstinence self-efficacy. In addition, online meeting attendance was more likely among respondents who attended two or more different types of mutual-help groups (rather than just one type), and whose primary group was 12-step or WFS rather than LifeRing or SMART. Longitudinal analyses found an interaction between online meeting attendance (yes or no) and time on the outcomes of alcohol and total abstinence such that, compared to those who did not attend online meetings, online meeting attendees were less likely to be abstinent at baseline but were about the same on abstinence at 12 months. However, the interaction effect was attenuated when the model adjusted for mutual-help use characteristics. CONCLUSIONS: The findings inform mutual-help groups, providers, and researchers' efforts to sustain and expand this resource by suggesting that online meeting attendance may have appeal and be helpful to mutual-help group members who are earlier in their recovery.


Subject(s)
Alcoholism , COVID-19 , Substance-Related Disorders , Adult , Alcoholics Anonymous , Alcoholism/therapy , Female , Humans , Male , Pandemics , Self-Help Groups
7.
Disasters ; 45 Suppl 1: S146-S173, 2021 Dec.
Article in English | MEDLINE | ID: covidwho-1561990

ABSTRACT

How to respond quickly, effectively, and sensitively to large-scale crises is debated at length in the aid sector. Institutional focuses on projects and outcomes have led to abundant literature on the efficacy of external interventions, while the actions of individuals and communities to meet their own needs remain under researched. This paper seeks to close the gap by joining global trends and specific case studies to explore the scale, breadth, and characteristics of citizen and community-led responses to the Covid-19 pandemic of 2020-21. Using mixed methods, it argues that mutual aid, self-help, and other spontaneous community measures were vital to the early response to Covid-19 globally. Such endeavours have limitations, however, which can be strengthened with the right national and international support. The paper concludes by calling on authorities and aid actors to widen their understanding of 'first response' and provide meaning ful support to mutual aid and local self-help initiatives now and in the future.


Subject(s)
COVID-19 , Forecasting , Humans , Pandemics , SARS-CoV-2 , Self-Help Groups
10.
Medicina (Kaunas) ; 57(11)2021 Oct 27.
Article in English | MEDLINE | ID: covidwho-1534175

ABSTRACT

Background and Objectives: Individuals with cancer, especially advanced cancer, are faced with numerous difficulties associated with the disease, including an earlier death than expected. Those who are able to confront and accept the hardships associated with the disease in a way that aligns with their beliefs benefit from more positive psychological outcomes compared to those who are aware of their diagnosis but are unable to accept it. To date, there is limited research exploring factors contributing to illness and death acceptance in the context of advanced cancer in group therapy settings. Materials and Methods: The current study used a Directed Content Analysis approach on transcripts of online advanced cancer support groups to investigate if and how Yalom's existential factors played a role in the emergence of acceptance. Results: The online support group platform, combined with the help of facilitators, offered supportive environments for individuals seeking help with cancer-related distress by helping patients move towards acceptance. Some participants had already begun the process of accepting their diagnosis before joining the group, others developed acceptance during the group process, while a few continued to be distressed. Our analysis revealed the emergence of four themes related to illness acceptance: (1) Facilitator-Initiated Discussion, including sub-themes of Mindfulness, Relaxation and Imagery, Changing Ways of Thinking, and Spirituality; (2) Personal attitudes, including sub-themes of Optimism and Letting Go of Control; (3) Supportive Environment, including the sub-themes of Providing Support to Others and Receiving Support from Others; and (4) Existential Experience, which included sub-themes of Living with the Diagnosis for an Extended Amount of Time, Legacy and Death Preparations, and Appreciating life. Conclusions: With a paradigm shift to online delivery of psychological services, recognizing factors that contribute to acceptance when dealing with advanced cancer may help inform clinical practices. Future studies should explore patient acceptance longitudinally to inform whether it emerges progressively, which has been suggested by Kübler-Ross.


Subject(s)
Mindfulness , Neoplasms , Awareness , Emotions , Humans , Neoplasms/therapy , Self-Help Groups
11.
Am J Public Health ; 111(S2): S82-S83, 2021 07.
Article in English | MEDLINE | ID: covidwho-1526716
14.
J Med Internet Res ; 23(9): e30274, 2021 09 21.
Article in English | MEDLINE | ID: covidwho-1430618

ABSTRACT

BACKGROUND: Fatigue is the most commonly reported symptom in patients with persistent complaints following COVID-19 (ie, long COVID). Longitudinal studies examining the intensity of fatigue and differentiating between physical and mental fatigue are lacking. OBJECTIVE: The objectives of this study were to (1) assess the severity of fatigue over time in members of online long COVID peer support groups, and (2) assess whether members of these groups experienced mental fatigue, physical fatigue, or both. METHODS: A 2-wave web-based follow-up study was conducted in members of online long COVID peer support groups with a confirmed diagnosis approximately 3 and 6 months after the onset of infectious symptoms. Demographics, COVID-19 diagnosis, received health care (from medical professionals or allied health care professionals), fatigue (Checklist Individual Strength-subscale subjective fatigue [CIS-Fatigue]; 8-56 points), and physical and mental fatigue (self-constructed questions; 3-21 points) were assessed. Higher scores indicated more severe fatigue. A CIS-Fatigue score ≥36 points was used to qualify patients as having severe fatigue. RESULTS: A total of 239 patients with polymerase chain reaction/computed tomography-confirmed COVID-19 completed the survey 10 weeks (SD 2) and 23 weeks (SD 2) after onset of infectious symptoms, respectively (T1 and T2). Of these 239 patients, 198 (82.8%) were women; 142 (59.4%) had no self-reported pre-existing comorbidities; 208 (87%) self-reported being in good health before contracting COVID-19; and 62 (25.9%) were hospitalized during acute infection. The median age was 50 years (IQR 39-56). The vast majority of patients had severe fatigue at T1 and T2 (n=204, 85.4%, and n=188, 78.7%, respectively). No significant differences were found in the prevalence of normal, mild, and severe fatigue between T1 and T2 (P=.12). The median CIS-Fatigue score was 48 points (IQR 42-53) at T1, and it decreased from T1 to T2 (median change: -2 points, IQR -7 to 3; P<.001). At T1, a median physical fatigue score of 19 points (IQR 16-20) and a median mental fatigue score of 15 points (IQR 10-17) were reported; these scores were lower at T2 for physical but not for mental fatigue (median change for physical fatigue -1 point, IQR -3 to 0, P<.001; median change for mental fatigue 0 points, IQR -3 to 3, P=.52). At the time of completing the follow-up survey, 194/239 (81.2%) and 164/239 (68.6%) of all patients had received care from at least one medical professional and one allied health care professional, respectively. CONCLUSIONS: Fatigue in members of online long COVID support groups with a confirmed COVID-19 diagnosis decreases from 10 to 23 weeks after onset of symptoms. Despite this, severe fatigue remains highly prevalent. Both physical and mental fatigue are present. It remains unclear whether and to what extent fatigue will resolve spontaneously in the longer term. TRIAL REGISTRATION: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.


Subject(s)
COVID-19 Testing , COVID-19 , COVID-19/complications , Female , Follow-Up Studies , Humans , Internet , Middle Aged , SARS-CoV-2 , Self-Help Groups
15.
J Med Internet Res ; 23(9): e30274, 2021 09 21.
Article in English | MEDLINE | ID: covidwho-1399082

ABSTRACT

BACKGROUND: Fatigue is the most commonly reported symptom in patients with persistent complaints following COVID-19 (ie, long COVID). Longitudinal studies examining the intensity of fatigue and differentiating between physical and mental fatigue are lacking. OBJECTIVE: The objectives of this study were to (1) assess the severity of fatigue over time in members of online long COVID peer support groups, and (2) assess whether members of these groups experienced mental fatigue, physical fatigue, or both. METHODS: A 2-wave web-based follow-up study was conducted in members of online long COVID peer support groups with a confirmed diagnosis approximately 3 and 6 months after the onset of infectious symptoms. Demographics, COVID-19 diagnosis, received health care (from medical professionals or allied health care professionals), fatigue (Checklist Individual Strength-subscale subjective fatigue [CIS-Fatigue]; 8-56 points), and physical and mental fatigue (self-constructed questions; 3-21 points) were assessed. Higher scores indicated more severe fatigue. A CIS-Fatigue score ≥36 points was used to qualify patients as having severe fatigue. RESULTS: A total of 239 patients with polymerase chain reaction/computed tomography-confirmed COVID-19 completed the survey 10 weeks (SD 2) and 23 weeks (SD 2) after onset of infectious symptoms, respectively (T1 and T2). Of these 239 patients, 198 (82.8%) were women; 142 (59.4%) had no self-reported pre-existing comorbidities; 208 (87%) self-reported being in good health before contracting COVID-19; and 62 (25.9%) were hospitalized during acute infection. The median age was 50 years (IQR 39-56). The vast majority of patients had severe fatigue at T1 and T2 (n=204, 85.4%, and n=188, 78.7%, respectively). No significant differences were found in the prevalence of normal, mild, and severe fatigue between T1 and T2 (P=.12). The median CIS-Fatigue score was 48 points (IQR 42-53) at T1, and it decreased from T1 to T2 (median change: -2 points, IQR -7 to 3; P<.001). At T1, a median physical fatigue score of 19 points (IQR 16-20) and a median mental fatigue score of 15 points (IQR 10-17) were reported; these scores were lower at T2 for physical but not for mental fatigue (median change for physical fatigue -1 point, IQR -3 to 0, P<.001; median change for mental fatigue 0 points, IQR -3 to 3, P=.52). At the time of completing the follow-up survey, 194/239 (81.2%) and 164/239 (68.6%) of all patients had received care from at least one medical professional and one allied health care professional, respectively. CONCLUSIONS: Fatigue in members of online long COVID support groups with a confirmed COVID-19 diagnosis decreases from 10 to 23 weeks after onset of symptoms. Despite this, severe fatigue remains highly prevalent. Both physical and mental fatigue are present. It remains unclear whether and to what extent fatigue will resolve spontaneously in the longer term. TRIAL REGISTRATION: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.


Subject(s)
COVID-19 Testing , COVID-19 , COVID-19/complications , Female , Follow-Up Studies , Humans , Internet , Middle Aged , SARS-CoV-2 , Self-Help Groups
17.
J Subst Abuse Treat ; 131: 108568, 2021 12.
Article in English | MEDLINE | ID: covidwho-1322236

ABSTRACT

BACKGROUND: Mutual support groups play an extremely important role in providing opportunities for people to engage in alcohol and other drug (AOD) treatment and support. SMART Recovery groups employ cognitive, behavioural and motivational principles and strategies to offer support for a range of addictive behaviours. COVID-19 fundamentally changed the way that these groups could be delivered. 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.


Subject(s)
Behavior, Addictive , COVID-19 , Humans , Motivation , SARS-CoV-2 , Self-Help Groups
18.
Nurs Leadersh (Tor Ont) ; 34(2): 45-53, 2021 Jun.
Article in English | MEDLINE | ID: covidwho-1291839

ABSTRACT

Absenteeism rates among nurses have increased across Canada over the last several years, with work environment challenges and staffing shortages being possible contributors. With the onset of the COVID-19 pandemic, nurses have worked under increasingly stressful conditions. Unsurprisingly, many nurses are facing mental health challenges. Digital tools to support and enhance access to mental health services are one strategy to support the mental health of nurses. This paper outlines the digital tools and virtual programs available to support the mental health of nurses, recognizing that there is no single solution to address the mental health challenges faced by Canadian nurses during these difficult times.


Subject(s)
Nurses/psychology , Self-Help Groups , Social Networking , COVID-19/epidemiology , COVID-19/nursing , Canada , Humans , Mental Health Services/organization & administration , Mobile Applications , Pandemics , SARS-CoV-2 , Technology
19.
J Foot Ankle Res ; 14(1): 46, 2021 Jun 30.
Article in English | MEDLINE | ID: covidwho-1286830

ABSTRACT

BACKGROUND: In response to the COVID-19 pandemic, populations were advised to remain at home to control viral spread. Government-mandated restrictions on free movement affected individuals' engagement with physical activity, with reported increases leading to biopsychosocial health benefits and conversely increased sedentary behaviour leading to poorer health. Good foot health is key to enabling physical activity and maximal participation in activities of occupation and daily living. METHODS: A population-based cross-sectional study was performed, using a web-based platform. Quantitative and qualitative data were captured through responses to closed and open survey questions. Anybody with a foot health condition was eligible to participate in the online survey. Links were sent through professional networks, support groups and charities, using a snowball strategy to maximise participation. RESULTS: Two hundred fifty-five respondents completed the survey. Most (n = 193, 75.69%) reported an ongoing foot pain or problem that had been present for 4 weeks or longer, whilst 49 respondents (19.22%) noted a new pain or problem. Pain was the most frequently reported symptom (n = 139, 54.51%), whilst change in appearance of the foot was also commonly reported (n = 122, 47.84%), often alongside the observable presence of swelling. Musculoskeletal foot symptoms were frequently reported (n = 123, 48%), and were significantly associated with reported reduced physical activity (X2 = 6.61, p = 0.010). Following qualitative analysis five themes and 11 subthemes emerged, informed by 49 independent codes. A central theme of lockdown disrupting support networks, both formal (healthcare providers) and informal (friends or family members) emerged. The 5 sub-themes were: 1. foot pain is a constant companion, 2. self-care, 3. 'cope or crumble' scenarios, 4. future intent to access healthcare and 5. reduced ability to undertake physical activity. CONCLUSIONS: Pain was the most frequently reported foot problem during COVID-19 lockdown restriction. Lockdown restrictions disrupted support networks integral to maintaining foot health. Poor foot health impacted people's ability to remain physically active. Complaints previously considered relatively 'minor' such as support for skin and nail care, were found to be exacerbated by restricted support networks, leading to greater negative impact.


Subject(s)
COVID-19/prevention & control , Exercise/psychology , Foot/pathology , Musculoskeletal Pain/epidemiology , Social Isolation/psychology , Activities of Daily Living/psychology , Adult , Aged , COVID-19/diagnosis , COVID-19/epidemiology , COVID-19/virology , Communicable Disease Control/statistics & numerical data , Cross-Sectional Studies , Evaluation Studies as Topic , Female , Government Regulation , Humans , Male , Middle Aged , Musculoskeletal Pain/diagnosis , Patient Participation , SARS-CoV-2/genetics , Sedentary Behavior , Self Care/psychology , Self-Help Groups/organization & administration , Surveys and Questionnaires
20.
Z Evid Fortbild Qual Gesundhwes ; 163: 20-29, 2021 Jun.
Article in German | MEDLINE | ID: covidwho-1243245

ABSTRACT

BACKGROUND: Self-help organizations act in a self-determined manner, but can be strengthened by conducive framework conditions such as advanced training programs. The Austrian Competence and Service Agency for Self-help ÖKUSS was created as part of the framework of the concept for public promotion of self-help. It developed an advanced training program for the systematic support of nationwide self-help organizations (NSHO). The article describes the conceptual development of an advanced training program and discusses how to deal with ambivalences arising in the process. METHOD: Three training tracks were derived from the objectives of the concept for the public promotion of self-help (promoting the visibility of self-help organizations, strengthening self-help organizations in their activities, and patient participation). To determine the contents, the advanced training needs of NSHO were identified on the basis of process-produced data (including feedback forms), relevant literature, and the results of workshops with self-help representatives. An Internet search was conducted to build on existing offerings. The ÖKUSS concept was developed in several workshops with representatives of self-help organizations and its contents and framework conditions were discussed. RESULTS: Training Track 1 "Strengthening self-help activities" aims to strengthen the self-image of NSHO as a self-help organization and to support the implementation of activities with introductory seminars and additional workshops. Training Track 2 "Promoting cooperation" supports the meeting and dialogue between NSHO representatives and experts with expert dialogues and annual projects. Training Track 3 "Strengthening collective patient participation" prepares NSHO representatives for participation in health policy decision-making processes in a modular course. DISCUSSION AND CONCLUSIONS: During the development process, ambivalences in a social, factual, time and space dimension were dealt with: On the social dimension, the aim was to take decisions regarding the objectives, form and content of the continuing education program as closely as possible to the participants and to offer low-threshold participation. On the factual level, the focus was on the competence of those affected and/or the transfer of competence for implementing activities. In terms of time, a balance had to be struck between the time resources available to the NSHO representatives and the time required to develop competence. In terms of space, on-site events were preferred to online events (before COVID-19). Finally, a different approach was chosen for each training track. For the further development of the advanced training program, a piloting and a participatory development with NSHO representatives is recommended.


Subject(s)
COVID-19 , Austria , Germany , Humans , SARS-CoV-2 , Self-Help Groups
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