Infertility patients' need and preferences for online peer support.
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ABSTRACT:
SUBMITTER: Grunberg PH
PROVIDER: S-EPMC6282097 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundOnline peer support forums require oversight to ensure they remain safe and therapeutic. As online communities grow, they place a greater burden on their human moderators, which increases the likelihood that people at risk may be overlooked. This study evaluated the potential for machine learning to assist online peer support by directing moderators' attention where it is most needed.ObjectiveThis study aimed to evaluate the accuracy of an automated triage system and the extent to which it influences moderator behavior.MethodsA machine learning classifier was trained to prioritize forum messages as green, amber, red, or crisis depending on how urgently they require attention from a moderator. This was then launched as a set of widgets injected into a popular online peer support forum hosted by ReachOut.com, an Australian Web-based youth mental health service that aims to intervene early in the onset of mental health problems in young people. The accuracy of the system was evaluated using a holdout test set of manually prioritized messages. The impact on moderator behavior was measured as response ratio and response latency, that is, the proportion of messages that receive at least one reply from a moderator and how long it took for these replies to be made. These measures were compared across 3 periods: before launch, after an informal launch, and after a formal launch accompanied by training.ResultsThe algorithm achieved 84% f-measure in identifying content that required a moderator response. Between prelaunch and post-training periods, response ratios increased by 0.9, 4.4, and 10.5 percentage points for messages labelled as crisis, red, and green, respectively, but decreased by 5.0 percentage points for amber messages. Logistic regression indicated that the triage system was a significant contributor to response ratios for green, amber, and red messages, but not for crisis messages. Response latency was significantly reduced (P<.001), between the same periods, by factors of 80%, 80%, 77%, and 12% for crisis, red, amber, and green messages, respectively. Regression analysis indicated that the triage system made a significant and unique contribution to reducing the time taken to respond to green, amber, and red messages, but not to crisis messages, after accounting for moderator and community activity.ConclusionsThe triage system was generally accurate, and moderators were largely in agreement with how messages were prioritized. It had a modest effect on response ratios, primarily because moderators were already more likely to respond to high priority content before the introduction of triage. However, it significantly and substantially reduced the time taken for moderators to respond to prioritized content. Further evaluations are needed to assess the impact of mistakes made by the triage algorithm and how changes to moderator responsiveness impact the well-being of forum members.
| S-EPMC6658385 | biostudies-literature
Project description:Help seeking for online peer and other social support in response to depression and other mental health problems offers an electronic technology alternative to traditional mental health care. Here, with nationally representative samples of adult community residents in the USA, we study online peer support help seeking, estimate its occurrence, and investigate depression and other suspected predictors and correlates, some of which might prove to be causal influences.The data are from nationally representative probability sample surveys of the non-institutionalized US adult population, with a new independent sample assessed via confidential computerized self-assessment modules each year from 2004 to 2010, yielding estimates about online peer support. A total of 264,431 adults participated in these years.An estimated three per 1000 adults (0.3%) seek online peer support for mental health problems each year (95% confidence interval 0.0022-0.0036). Individuals with depression and/or serious psychological distress are strongly over-represented among these adult online peer support help seekers (odds ratio >7, p < 0.001). Associations with college education, being non-Hispanic white, being female, and age are also noteworthy (p < 0.05).Online help seeking for mental health social support is becoming frequent enough for study in large sample national surveys, and might well be fostered by active neuropsychiatric ailments such as depression or other serious psychological distress. Open questions remain about whether the result is beneficial, or conditions required for efficacious online peer support, as might be disclosed in definitive evidence from randomized controlled trials.
| S-EPMC4327823 | biostudies-other
Project description:IntroductionPeer support is receiving increasing attention as both an effective and cost-effective intervention method to support the self-management of chronic health conditions. Given that an increasing proportion of Canadians have internet access and the increasing implementation of web-based interventions, online peer support interventions are a promising option to address the burden of chronic diseases. Thus, the specific research question of this scoping review is the following: What is known from the existing literature about the key characteristics of online peer support interventions for adults with chronic conditions? METHODS AND ANALYSIS: We will use the methodological frameworks used by Arksey and O'Malley as well as Levac and colleagues for the current scoping review. To be eligible for inclusion, studies must report on adults (?18 years of age) with one of the Public Health Agency of Canada chronic conditions or HIV/AIDS. We will limit our review to peer support interventions delivered through online formats. All study designs will be included. Only studies published from 2012 onwards will be included to ensure relevance to the current healthcare context and feasibility. Furthermore, only English language studies will be included. Studies will be identified by searching a variety of databases. Two reviewers will independently screen the titles and abstracts identified by the literature search for inclusion (ie, level 1 screening), the full text articles (ie, level 2 screening) and then perform data abstraction. Abstracted data will include study characteristics, participant population, key characteristics of the intervention and outcomes collected.DisseminationThis review will identify the key features of online peer support interventions and could assist in the future development of other online peer support programmes so that effective and sustainable programmes can be developed.
| S-EPMC5623492 | biostudies-literature
Project description:BACKGROUND: Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care. METHODS: A sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used. RESULTS: 105 male participants completed the online survey (mean age 37?±?11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support. CONCLUSION: The web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.
| S-EPMC4059885 | biostudies-other
Project description:ObjectiveThis pilot study evaluated the feasibility and efficacy of two methods of delivering a cognitive behaviorally informed Internet intervention for depression for adults 65 years and older.MethodsForty-seven participants were enrolled and assigned to receive one of two versions of the Internet intervention, either delivered individually (III) or with peer support (II+PS), or to a wait list control group (WLC). Primary outcomes included change in depressive symptoms from baseline to post-intervention (week 8), site use, self-reported usability, and coach time. Secondary outcomes included measures of social support and isolation and anxiety.ResultsFollow-up data were provided by 85.1% (40 of 47) of enrolled participants. There were significant differences in depression change across groups (F(2,37) = 3.81, p = 0.03). Greater reductions in depressive symptoms were found for the III (p = 0.02) and II+PS (p = 0.03) compared with WLC, and significantly less coach time was required in the II+PS (p = 0.003).ConclusionsThese results highlight the potential of cognitive-behaviorally informed Internet interventions for older adults with depression, and indicate that peer-supported programs are both acceptable and equivalent to individually delivered Internet interventions. Including peer support may be a viable and potentially more cost-effective option for disseminating online treatments for depression for older adults.
| S-EPMC5600661 | biostudies-literature
Project description:BackgroundOsteoarthritis (OA) is a chronic, disabling, and prevalent disorder. As there is no cure for OA, long-term self-management is paramount. Support groups (SGs) can facilitate self-management among people living with OA. Understanding preferences in design and features of SGs, including online SGs (OSGs), among people with OA can inform future development of SG interventions for this condition.ObjectiveThe objective of this study was to investigate health care- and health information-seeking behavior, digital literacy, and preferences for the design of SGs in people with OA. The study also explored the perceived barriers and enablers to being involved in OSGs.MethodsAn online survey study was conducted with a mixed method design (quantitative and qualitative). Individuals aged ≥45 years with knee, hip, or back pain for ≥3 months were recruited from an extant patient database of the Institute of Bone and Joint Research via email invitations. Quantitative elements of the survey included questions about sociodemographic background; health care- and health information-seeking behavior; digital literacy; and previous participation in, and preferences for, SGs and OSGs. Respondents were classified into 2 groups (Yes-SG and No-SG) based on previous participation or interest in an SG. Group differences were assessed with Chi-square tests (significance level set at 5%). Responses to free-text questions relating to preferences regarding OSG engagement were analyzed qualitatively using an inductive thematic analysis.ResultsA total of 415 people with OA completed the survey (300/415, 72.3% females; 252/415, 61.0% lived in a major city). The Yes-SG group included 307 (307/415, 73.9%) participants. Between the Yes-SG and No-SG groups, there were no differences in sociodemographic characteristics, health care- and health information-seeking behavior, and digital literacy. An online format was preferred by 126/259 (48.7%) of the Yes-SG group. Trained peer facilitators were preferred, and trustworthiness of advice and information were highly prioritized by the respondents. Qualitative analysis for OSG participation revealed 5 main themes. Lack of time and motivation were the main barriers identified. The main enablers were related to accessibility, enjoyment of the experience, and the content of the discussed information.ConclusionsThese findings highlight the preferences in design features and content of SGs and OSGs and may assist in the further development of such groups.
| S-EPMC6918205 | biostudies-literature
Project description:People with multiple sclerosis often experience depression and anxiety, negatively affecting their quality of life, especially their social life. Peer support, whether in person or online, could improve social connection and coping. Online peer support allows people to engage from their home at a time that suits them. We sought to explore the benefits and challenges of online peer support and to identify successful elements of online peer support for people with multiple sclerosis. Using the narrative synthesis method, 6 databases were searched in April 2020 for articles published between 1989 and 2020; the search was updated in May 2022. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist. Of 10,987 unique articles identified through the database search, 11 were included. Benefits of online peer support included sharing information and experiences and emotional support. Successful elements included having a dedicated space to save information and the convenience of online peer support. Challenges included verification of information and the lack of nonverbal communication. Online peer support can help those unable to access in-person support groups and can reduce the risk of social isolation. However, multiple sclerosis symptoms may make it difficult to use technological devices. Research is needed to further explore potential barriers to online peer support.
| S-EPMC9749829 | biostudies-literature
Project description:BackgroundInternet support groups enable users to provide peer support by exchanging knowledge about and experiences in coping with their illness. Several studies exploring the benefits of internet support groups for depression have found positive effects on recovery-oriented values, including empowerment. However, to date, little attention has been paid to user narratives.ObjectiveThis study aims to capture the user perspective on an online peer support community for depression with a focus on the modes of user engagement and the benefits users derive from participation in the forum.MethodsIn this qualitative study, we conducted 15 semistructured interviews with users of Depression Connect, a newly developed online peer support community for individuals with depression. Combining a concept-driven and a data-driven approach, we aimed to gain insight into what users value in our Depression Connect platform and whether and how the platform promotes empowerment. We performed a thematic analysis to explore the merits and demerits reported by users by using theoretical concepts widely used in internet support group research. In the subsequent data-driven analysis, we sought to understand the relationship between different styles of user engagement and the participants' experiences with the use of Depression Connect. Data analysis consisted of open, axial, and selective coding. To include as diverse perspectives as possible, we opted for purposive sampling. To verify and validate the (interim) results, we included negative cases and performed member checks.ResultsWe found participation in Depression Connect contributes to a sense of belonging, emotional growth, self-efficacy, and empowerment. "Getting too caught up" was the most frequently reported negative aspect of using Depression Connect. The deployment and development of three participation styles (ie, reading, posting, and responding) affected the perceived benefits of Depression Connect use differentially, where the latter style was central to enhancing empowerment. "Being of value to others" boosted the users' belief in their personal strength. Finally, Depression Connect was predominantly used to supplement offline support and care for depression, and it mainly served as a safe environment where members could freely reflect on their coping mechanisms for depression and exchange and practice coping strategies.ConclusionsOur findings shed new light on user engagement processes on which internet support groups rely. The online community primarily served as a virtual meeting place to practice (social) skills for deployment in the offline world. It also allowed the members to learn from each other's knowledge and experiences and explore newly gained insights and coping skills.
| S-EPMC8314160 | biostudies-literature
Project description:ObjectiveTo compile and evaluate the evidence on the effects on health and social outcomes of computer based peer to peer communities and electronic self support groups, used by people to discuss health related issues remotely.Design and data sourcesAnalysis of studies identified from Medline, Embase, CINAHL, PsycINFO, Evidence Based Medicine Reviews, Electronics and Communications Abstracts, Computer and Information Systems Abstracts, ERIC, LISA, ProQuest Digital Dissertations, Web of Science.Selection of studiesWe searched for before and after studies, interrupted time series, cohort studies, or studies with control groups; evaluating health or social outcomes of virtual peer to peer communities, either as stand alone interventions or in the context of more complex systems with peer to peer components.Main outcome measuresPeer to peer interventions and co-interventions studied, general characteristics of studies, outcome measures used, and study results.Results45 publications describing 38 distinct studies met our inclusion criteria: 20 randomised trials, three meta-analyses of n of 1 trials, three non-randomised controlled trials, one cohort study, and 11 before and after studies. Only six of these evaluated "pure" peer to peer communities, and one had a factorial design with a "peer to peer only" arm, whereas 31 studies evaluated complex interventions, which often included psychoeducational programmes or one to one communication with healthcare professionals, making it impossible to attribute intervention effects to the peer to peer community component. The outcomes measured most often were depression and social support measures; most studies did not show an effect. We found no evidence to support concerns over virtual communities harming people.ConclusionsNo robust evidence exists of consumer led peer to peer communities, partly because most peer to peer communities have been evaluated only in conjunction with more complex interventions or involvement with health professionals. Given the abundance of unmoderated peer to peer groups on the internet, research is required to evaluate under which conditions and for whom electronic support groups are effective and how effectiveness in delivering social support electronically can be maximised.
| S-EPMC411092 | biostudies-literature
Project description:Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.
| S-EPMC8870696 | biostudies-literature