Peer-to-peer support

  • 文章类型: Journal Article
    脊柱的原发性骨和软组织肉瘤很少见,占所有肿瘤发生率的0.2%以下。在患者和公众参与事件之后,确定了探索患者支持途径的必要性,启动了这个服务评估项目。
    在使用脊柱肉瘤服务的人群中确定点对点支持项目的可接受性和可行性。
    用户通过MicrosoftTeams配对和介绍。收集了介绍伙伴之前和之后的定量和定性数据。
    服务用户认为,尽管他们在诊断时更喜欢有一个伙伴,被分配一个伙伴让他们感到放心和更好的支持。
    该项目广受好评,初步数据令人鼓舞。因此,由于第一批参与者的早期发现,该服务正在继续推出好友计划。
    UNASSIGNED: Primary bone and soft tissue sarcoma of the spine are rare and account for less than 0.2% of all neoplasm incidences. Following a patient and public involvement event, the need to explore patient support pathways was identified, which initiated this service evaluation project.
    UNASSIGNED: To determine the acceptability and feasibility of a peer-to-peer support project among people using the spine sarcoma service.
    UNASSIGNED: Users were paired and introduced via Microsoft Teams. Quantitative and qualitative data both pre- and post-introduction of a buddy were collected.
    UNASSIGNED: Service users felt that, although they would have preferred having a buddy at the time of their diagnosis, being allocated a buddy made them feel reassured and better supported.
    UNASSIGNED: The project was well received and preliminary data are encouraging. Therefore, due to early findings from the first participants, the service is continuing to roll out the buddy programme.
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  • 文章类型: Journal Article
    背景:在线论坛广泛用于心理健康同伴支持。然而,它们的安全性和有效性的证据是混合的。进一步的研究侧重于阐明论坛使用产生积极和消极影响的背景,以便为实施创新提供信息。
    目的:本研究旨在开发一种现实主义程序理论来解释在线心理健康同伴支持论坛对用户的影响。
    方法:我们对2019年至2023年之间发表的文献进行了现实主义综合,并对论坛工作人员进行了18位利益相关者访谈。
    结果:对102个证据来源和18个访谈的综合产生了一个包含22个上下文-机制-结果配置的总体程序理论。研究结果表明,用户对心理安全的看法和论坛内容的个人相关性是持续参与的基础。提供便利获取信息和建议的安全和活跃的论坛可以改善心理健康自我效能。在欢迎和非评判性社区的背景下,用户可能会受益于与同龄人一起探索个人困难的机会,体验减少了心理健康体验的孤立和正常化,并相互鼓励。程序理论强调了主持人在创造便利的在线空间中的重要作用,刺激社区参与,并限制对令人痛苦的内容的访问。对于举办心理健康论坛的组织来说,一个关键挑战在于平衡论坛的开放性和匿名性以及执行规则的必要性。例如限制用户可以讨论的内容,促进社区安全。
    结论:这是在线心理健康同伴支持论坛的第一个现实主义综合。新颖的计划理论强调了成功的实施如何取决于建立增强安全性的协议和维护用户参与以促进论坛可持续性的策略。
    背景:PROSPEROCRD42022352528;https://www.crd.约克。AC.uk/prospro/display_record.php?RecordID=352528。
    BACKGROUND: Online forums are widely used for mental health peer support. However, evidence of their safety and effectiveness is mixed. Further research focused on articulating the contexts in which positive and negative impacts emerge from forum use is required to inform innovations in implementation.
    OBJECTIVE: This study aimed to develop a realist program theory to explain the impacts of online mental health peer support forums on users.
    METHODS: We conducted a realist synthesis of literature published between 2019 and 2023 and 18 stakeholder interviews with forum staff.
    RESULTS: Synthesis of 102 evidence sources and 18 interviews produced an overarching program theory comprising 22 context-mechanism-outcome configurations. Findings indicate that users\' perceptions of psychological safety and the personal relevance of forum content are foundational to ongoing engagement. Safe and active forums that provide convenient access to information and advice can lead to improvements in mental health self-efficacy. Within the context of welcoming and nonjudgmental communities, users may benefit from the opportunity to explore personal difficulties with peers, experience reduced isolation and normalization of mental health experiences, and engage in mutual encouragement. The program theory highlights the vital role of moderators in creating facilitative online spaces, stimulating community engagement, and limiting access to distressing content. A key challenge for organizations that host mental health forums lies in balancing forum openness and anonymity with the need to enforce rules, such as restrictions on what users can discuss, to promote community safety.
    CONCLUSIONS: This is the first realist synthesis of online mental health peer support forums. The novel program theory highlights how successful implementation depends on establishing protocols for enhancing safety and strategies for maintaining user engagement to promote forum sustainability.
    BACKGROUND: PROSPERO CRD42022352528; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=352528.
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  • 文章类型: Journal Article
    在与由于其社会边缘化地位而遭受慢性逆境的儿童和家庭一起工作时,服务参与至关重要。Further,社会人口统计学差异存在于服务系统内的服务参与中,包括基于社区的行为健康;可能部分地,结构问题导致服务系统反应迟钝。尽管有这些知识,很大比例的家庭参与文献继续通过基于赤字和以家庭为中心的视角来处理,而忽略了重要的系统性考虑,并进一步加剧了健康不平等。借鉴社会生态框架(Stokols,1996),这项研究的重点是探索同伴支持提供者(PSP)的价值,以了解社会文化响应在这种服务模式下的功能。从家庭和PSP收集个人访谈和焦点小组数据。主题分析(Braun&Clarke心理学定性研究,3(2)、77-101,2006)用于编码和合成收集的数据。研究结果强调了利用有意义和信任的关系来促进家庭参与服务的重要性。这些发现巩固了这样一种理解,即家庭参与是家庭之间关键关系的函数,提供者,和系统。这项工作还说明了PSP如何通过文化谦逊有机地体现社会文化反应能力,这是维持家庭参与的途径。
    Service engagement is critical when working with children and families experiencing chronic adversities because of their socially marginalized status. Further, sociodemographic disparities exist in service engagement within service systems including Community-Based Behavioral Health; likely in part, a result of structural issues driving unresponsive service systems. Despite this knowledge, a large proportion of the family engagement literature continues to be approached through a deficit-based and family-centric lens leaving out important systemic considerations and furthering health inequities. Drawing from a Socio-Ecological Framework (Stokols, 1996), this study focuses on exploring the value of peer support providers (PSPs) to understand how sociocultural responsiveness functions under this service model. Individual interviews and focus group data were collected from both families and PSPs. Thematic analysis (Braun & Clarke in Qualitative Research in Psychology, 3(2), 77-101, 2006) was utilized to code and synthetize the data collected. Findings highlight the importance of capitalizing on meaningful and trusting relationships to foster family engagement in services. These findings solidify the understanding that family engagement is a function of crucial relationships between family, provider, and systems. This work also illustrates how PSPs organic embodiment of sociocultural responsiveness through cultural humility is an avenue through which family engagement can be sustained.
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  • 文章类型: Journal Article
    第二个受害者的概念,描述为卫生保健专业人员在遭受创伤后的受害感,意想不到的医疗错误,由AlbertW.Wu于2000年首次介绍。从那以后,这一概念获得了巨大的吸引力,并激发了针对第二名受害者的援助计划的产生。大多数第二受害者事件是由用药错误导致的,儿科药剂师有经历第二受害者现象的高风险。第二个受害者可能会经历痛苦的心理和身体症状,通常类似于创伤后应激障碍。第二个受害者的典型轨迹,以及典型的支持需求,之前已经描述过,有几个组织通过创建正式计划来回应,这些计划旨在支持他们的员工在创伤工作场所经历中的事件。大多数支持计划涉及对等支持,小组会议,以及旨在提高应对技能的计划。额外资源可用于在其机构没有正式支持计划的卫生保健工作者,虽然这些是有限的。尽管有这些资源,全国各地的机构在支持成为悲剧第二受害者的员工方面还有额外增长的空间。
    The concept of the second victim, described as the sense of victimization of health care professionals following the exposure to a traumatic, unanticipated medical error, was first introduced in 2000 by Albert W. Wu. Since then, the concept has gained immense traction and inspired the generation of assistance programs for second victims. With most second victim occurrences resulting from medication errors, pediatric pharmacists are at a high risk of experiencing second victim phenomenon. Second victims may experience both psychological and physical symptoms of distress often akin to post-traumatic stress disorder. Typical trajectories for second victims, as well as typical support needs, have been previously described, with several organizations responding by creating formal programs designed to support their staff in the events of traumatic workplace experiences. Most support programs involve peer-to-peer support, group sessions, and programs designed to increase coping skills. Additional resources are available for health care workers who do not have formalized support programs at their institution, although these are limited. Despite these resources, institutions across the country have room for additional growth in their support of employees who become second victims to tragedy.
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  • 文章类型: Journal Article
    简介:新生儿重症监护病房(NICU)的支持小组对父母有利。从未研究过产前支持小组对需要入院的新生儿的准父母的有用性。方法:我们评估了NICU父母对他们希望在产前讨论的主题的需求,并制定了产前支持研讨会的内容。一项标准化调查前瞻性地评估了参加了研讨会的高风险怀孕单位的孕妇的观点。结果:在需求评估期间,295名父母引用了他们希望在产前讨论的主题:父母的罪恶感,未来的父母角色,使他们的经验/情绪正常化,应对许多损失,适应他们的新现实,控制和信任,关于NICU的信息,围绕婴儿的技术,常见的新生儿干预措施,NICU临床团队,以及父母在团队中的角色。这些发现被用来发展研讨会,包括主持人清单和视觉演示。在试点前阶段对会议的实际方面进行了测试/最后确定。在21名回答调查的孕妇中(平均胎龄29.3周),所有人都认为研讨会是有用的,这让他们感觉不那么孤独(95%),与其他妇女的交流是有益的(95%),并使她们对自己的处境有一定的控制(89%)。开放式问题的所有答案都是肯定的。结论:产前教育/支持研讨会提供了一种独特而有用的手段来支持未来的NICU父母。未来的调查将探讨这些产前干预措施是否可以改善临床结果。
    Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes.
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  • 文章类型: Systematic Review
    目的:癌症幸存者对等(PTP)支持的核心组成部分包括信息,情感,和社会心理方面。以前关于癌症同伴支持的文献包括专业和同伴主导的支持。我们的目的是总结非专业领导的PTP支持在癌症中的作用的研究。
    方法:我们通过介入设计对成人癌症幸存者的PTP支持研究进行了系统研究,将PTP支持的结果与任何对照进行比较。我们纳入了所有具有PTP支持精确定义的研究,从2000年1月至2023年3月在同行评审期刊上以英语或德语发表。
    结果:在N=609个确定的出版物中,我们纳入了符合纳入标准的n=18项随机对照试验(RCT).主要设置是通过电话提供二进位支持,面对面(FTF),和基于Web的在线支持。最常见的结果是痛苦,抑郁症状,焦虑,和生活质量(QoL)。总的来说,我们发现PTP支持对抑郁/焦虑的影响很小,应对,或性功能。与PTP干预相关的有益效果在BRCA中尤为明显,在FTF设置中,以及癌症特异性QoL结果的评估。
    结论:这篇综述显示,有一些RCT研究了PTP支持的短期效果。总的来说,需要更多具有高方法学标准的RCT来评估PTP支持的有效性.
    OBJECTIVE: Core components of peer-to-peer (PTP) support for cancer survivors include informational, emotional, and psychosocial aspects. Previous literature on peer support in cancer includes both professionally and peer-led support. Our objective was to summarize studies on the effects of non-professionally led PTP support in cancer.
    METHODS: We performed a systematic research on studies in PTP support of adult cancer survivors with an interventional design, comparing outcomes of PTP support against any control. We included all studies with a precise definition of a PTP support, published from January 2000 up to March 2023 in peer-reviewed journals in English or German.
    RESULTS: Out of N = 609 identified publications, we were are able to include n = 18 randomized-controlled trials (RCTs) fulfilling our inclusion criteria. Main settings were dyadic support via telephone, face-to-face (FTF), and web-based online support. Most common outcomes were distress, depressive symptoms, anxiety, and quality of life (QoL). Overall, we found only small effects of PTP support on depression/anxiety, coping, or sexual functioning. Beneficial effects associated with the PTP intervention were apparent in particular in BRCA, in FTF settings, and in assessments of cancer-specific QoL outcomes.
    CONCLUSIONS: This review shows that there are a few RCT investigating the effect of PTP support with short-term effects. Overall, there is a need for more RCTs with high methodological standards to evaluate the effectiveness of PTP support.
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  • 文章类型: Journal Article
    越来越多的心理干预措施正在转向在线交付模式。一种这样的干预是点对点支持,在这种情况下,这可能为患有精神疾病的互联网用户提供与生活在类似条件下的其他人联系和支持的机会。本文呼吁进一步研究如何将Facebook等平台用作同行支持的渠道以及可能构成其有效性的机制。我们讨论同行支持的背景,它是如何在线过渡的,并考虑可能有相关性的理论和模型。我们还考虑了在线同伴支持中适度的重要性以及基于特定社交网络的在线干预措施的开发。我们得出的结论是,对于将社交网站用作点对点支持干预措施,需要更多的研究来了解它们的有效性,节制在这些社区中的作用,以及产生用户体验到的利益的机制。
    An increasing number of psychological interventions are shifting to online modes of delivery. One such intervention is peer-to-peer support, which in this context may provide internet users living with mental health disorders an opportunity to connect with and support others living with similar conditions. This paper presents a call for further research into how platforms such as Facebook could be used as channels for peer support and the mechanisms that may underlie their effectiveness. We discuss the background of peer support, how it has transitioned online, and consider theories and models that may have relevance. We also consider the importance of moderation within online peer support and the development of specific social network-based online interventions. We conclude that for social network sites to be used as peer-to-peer support interventions, more research is needed to understand their effectiveness, the role of moderation in these communities, and the mechanisms that produce the benefits experienced by users.
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  • 文章类型: Journal Article
    Khuluma是一种社会心理和对等的mHealth干预措施,它使用短信来促进对艾滋病毒感染青少年(ALWH)的支持小组,旨在促进积极的健康结果。尽管最近在卫生领域以移动技术干预措施的形式使用移动技术激增,公开发表的描述其应用方法和过程的文献是有限的。我们介绍了一套用于在南非年轻人(15-20岁)中开发和试点KhulumamHealth干预措施的方法和过程。我们从比勒陀利亚和开普敦的四家诊所招募并招募了52名青少年(15-20岁)参加了为期6个月的Khuluma试点。参与者是ALWH,知道他们的地位,接受抗逆转录病毒治疗超过12个月,没有严重的抑郁症。我们进行了四次干预前后焦点小组讨论(FGD),其中ALWH的比例(n=36)使用参与式方法参加了试点研究。然后利用几个过程来实施这项试点研究。其中包括与ALWH进行较小的研究实施修改;组建虚拟小组;激活mHealth平台;促进和提供Khuluma干预措施。通过后续焦点小组讨论和短信数据了解干预措施的可接受性。最初的参与过程有助于根据参与者的需求定制干预设计。小组的同伴主导促进允许提供敏感的社会心理支持,使年轻人能够自由表达自己的意见,培养自我价值感,互动更多。移动技术的本质还允许参与者在他们的地理区域之外建立友谊,并与同龄人实时互动。在COVID-19不断发展的背景下,在虚拟空间中建立基于证据的干预设计和策展流程和方法至关重要。
    Khuluma is a psychosocial and peer-to-peer mHealth intervention that uses text messaging to facilitate support groups for adolescents living with HIV (ALWH) with the aim of contributing toward positive health outcomes. Although use of mobile technology in the form of mHealth interventions has proliferated recently in the field of health, published literature describing methods and processes of its application are limited. We present a set of methods and processes utilised to develop and pilot the Khuluma mHealth intervention amongst young people (15-20 years) in South Africa. We recruited and enrolled 52 adolescents (15-20-year olds) from four clinics in Pretoria and Cape Town to participate in a 6-month pilot of Khuluma. Participants were ALWH, aware of their status, on antiretroviral therapy for more than 12 months, and not suffering from severe depression. We conducted four pre and post intervention focus group discussions (FGDs) with a proportion of ALWH (n = 36) enrolled in the pilot study using participatory methods. Several processes were utilised to then implement this pilot study. These included engaging ALWH for minor study implementation modifications; forming virtual groups; activating the mHealth platform; facilitating and delivering the Khuluma intervention. The acceptability of the intervention was informed by follow-up focus group discussions and text message data. The initial participatory processes helped to tailor the intervention design to participants\' needs. The peer-led facilitation of the groups allowed for the provision of sensitive psychosocial support that allowed young people to express themselves freely, develop a sense of self-worth, and interact more. The nature of the mobile technology also allowed participants to build friendships beyond their geographic area and interact with their peers in real time. Within the evolving context of COVID-19, establishing evidence-based processes and methods for intervention design and curation in virtual spaces is critical.
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  • 文章类型: Journal Article
    背景:数字介导的同伴支持可能会改善阿片类药物使用障碍(OUD)的恢复。我们的目标是研究人们在Reddit上的在线OUD恢复社区(subreddits)中寻求支持的污名类型和来源。方法:我们从三个subreddit中提取所有包含柱头关键词的帖子,以及一个不包含柱头关键词的随机样本。我们进行了演绎内容分析,以确认帖子自我描述了污名的经历,并确定了类型(条件,干预)和来源(基于提供者的,public,自我,结构)的污名。结果:二百五十九个帖子自我报告了污名化的经历。大多数帖子描述了与OUD药物相关的干预耻辱。讨论干预污名的帖子承认污名在他们的治疗决策和治疗计划质量中的作用。最常见的污名来源是公众(包括家庭成员),以提供者为基础(医疗保健和药学工作者),结构性(工作场所,执法,儿童保护服务,和基于禁欲的自助小组),和自我。没有帖子提到礼貌污名。员额寻求帮助,以借鉴他们的经验,并参与倡导反对污名化的叙述。结论:我们的研究表明,在线社区中的人们寻求支持,以与离线社区中的人们类似的方式在Reddit上披露和管理污名化的经历,但没有礼貌污名化的讨论。由于每个subreddit都是不同需求的缩影,我们建议在这些subreddit的利益相关者之间开发合作资源的未来工作领域,以及在现有的Reddit社会规范中工作的公共卫生。
    Background: Digitally-mediated peer support may improve opioid use disorder (OUD) recovery. Our objective was to examine the types and sources of stigma that people seek support for in online OUD recovery communities (subreddits) on Reddit. Methods: We extracted all posts containing stigma keywords from three subreddits as well as a random sample that do not contain stigma keywords. We conducted deductive content analysis to confirm that the post self-described an experience of stigma and identify the type (condition, intervention) and source (provider-based, public, self, structural) of stigma. Results: Two-hundred and fifty-nine posts self-reported a stigmatizing experience. The majority of posts described an intervention stigma associated with medications for OUD. Posts discussing intervention stigma acknowledged the role of stigma in their treatment decision-making and quality of their treatment program. The most frequent sources of stigma were the public (including family members), provider-based (healthcare and pharmacy workers), structural (workplace, law enforcement, child protective services, and abstinence-based self-help groups), and self. No posts mentioned courtesy stigma. Posts sought assistance in navigating their experiences and participating in advocacy to counter stigmatized narratives. Conclusions: Our study indicates that people in online communities seek support to disclose and manage experiences of stigma on Reddit in similar ways to people in offline communities with the noted exception of an absence of discussions of courtesy stigma. Since each subreddit is a microcosm of varying needs, we suggest areas of future work for collaborative resources developed between stakeholders of these subreddits and public health that work within the preexisting Reddit social norms.
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  • 文章类型: Journal Article
    背景:有复杂护理需求(CCN)的儿童和青年的护理人员通常需要大量支持以确保其家庭的福祉。社交媒体提供了一个机会,可以通过计算机介导的交流来更好地支持护理人员,以获得社会支持。对等(P2P)支持组是照顾者获得所需支持的一种方式;然而,使用这些群体的照顾者的经验以及参与对患有CCN的儿童和青年的照顾者的感知影响尚不清楚.
    目的:本研究旨在探索使用基于Facebook的P2P支持小组进行交流的CCN儿童和青少年照顾者的经验,了解他们使用团队的动机,并调查其对项目和服务知识以及护理人员社区归属感的感知影响。
    方法:使用定性描述性设计来探索基于Facebook(元平台)的P2P支持小组对新不伦瑞克省CCN儿童和青少年的照顾者的经验和感知影响,加拿大。该组织于2020年10月在网络上启动,在COVID-19大流行期间,并导致108名护理人员加入该小组。分发了一份基于网络的调查,半结构化访谈于2021年2月进行,对成员进行了子样本。主题分析用于识别和报告与护理人员经验和感知的参与影响相关的模式。
    结果:Facebook小组成员的子样本完成了基于网络的调查(39/108,36.1%)和访谈(14/108,12.9%)。采访中总共出现了5个主题:安全空间,信息支持和指导,与同行的基于Web的连接,对项目和服务知识的影响,以及社区归属感的程度。参与者报告说加入该小组是为了获得特定地理位置的信息支持并与同伴联系。许多参与者报告说,他们对计划和服务的了解有所改善,并感到与社区有联系;然而,观察时间短和照顾者人群的多样性被认为是社区归属感的障碍.
    结论:社交媒体提供了一个重要的机会,可以促进患者和护理人员在可访问和有计划的环境中交流支持。这项研究的结果表明,参与基于网络的,特定于地理的P2P支持小组可以影响CCN儿童和青少年照顾者对服务和资源的感知知识以及社区归属感。此外,这项研究提供了深入了解参与私人社交媒体环境的CCN儿童和青少年照顾者的经历和动机。
    BACKGROUND: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known.
    OBJECTIVE: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers.
    METHODS: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers\' experiences and perceived impacts of participation.
    RESULTS: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging.
    CONCLUSIONS: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.
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