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Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey.

ABSTRACT: AIM:To explore experiences of peer support among parents of children with congenital heart defects. DESIGN:A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden. METHODS:Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation. RESULTS:Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. CONCLUSION:Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. IMPACT:This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

SUBMITTER: Carlsson T

PROVIDER: S-EPMC7702174 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey.

Carlsson Tommy T Klarare Anna A Mattsson Elisabet E

Journal of advanced nursing 20201003 12

<h4>Aim</h4>To explore experiences of peer support among parents of children with congenital heart defects.<h4>Design</h4>A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden.<h4>Methods</h4>Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An onl ...[more]

PMID: 33009854

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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.

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.

Project description:BackgroundLong 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.ObjectiveThe 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.MethodsI 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.ResultsLong 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.ConclusionsIf 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.

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.

Project description:Background:Peer support for people with long-term mental health problems is central to recovery-oriented approaches in mental health care. Peer support has traditionally been conducted offline in face-to-face groups, while online groups on the Internet have increased rapidly. Offline and online peer support groups are shown to have differing strengths and weaknesses. However, little is known about how combining the two formats might be experienced by service users, which this paper aims to illuminate. Methods:In this exploratory and descriptive study, a recovery-oriented Internet-based portal called ReConnect was used by service users in two mental health communities in Norway for 6-12 months. The portal included an online peer support group which also facilitated participation in local offline peer support groups. Both group formats were moderated by an employed service user consultant. Qualitative data about service users' experiences were collected through focus groups and individual interviews and inductively analyzed thematically. Results:A total of 14 female service users 22-67 years of age with various diagnoses participated in three focus groups and 10 individual interviews. Two main themes were identified: (1) balancing anonymity and openness, and (2) enabling connectedness. These themes are further illustrated with the subthemes: (i) dilemmas of anonymity and confidentiality, (ii) towards self-disclosure and openness, (iii) new friendships, and (iv) networks in the local community. Three of the subthemes mainly describe benefits, while challenges were more implicit and cut across the subthemes. Identified challenges were related to transitions from anonymity online to revealing one's identity offline, confidentiality, and barriers related to participation in offline peer support groups. Conclusions:This study suggests that online and offline peer support groups complement each other, and that combining them is mainly described as beneficial by service users. Identified benefits appeared to arise from service users' options of one format or the other, or that they could combine formats in ways that suited their individual values and comfort zones. Moderation by a trained service user consultant appeared essential for both formats and can be used systematically to address identified challenges. Combining online and offline peer support groups is a promising concept for facilitating recovery-oriented care and warrants continued research.

Dataset Information

Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey.

Publications

Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey.

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