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Peer-to-Peer Health Communication in Older Adults' Online Communities: Protocol for a Qualitative Netnographic Study and Co-Design Approach.

ABSTRACT: BACKGROUND:Online communities provide an environment in which people with similar health concerns can interact and access content that can support the self-management of long-term conditions (LTCs). Recently, the importance of online social networks as sources of health information and social support has been brought into focus with the emergence and widespread societal impacts of COVID-19. Although online communities exist for older adults, little is known about the specific health and self-care topics that older people discuss in such environments and how these relate to users' support needs and outcomes. A better understanding of users' needs and peer-to-peer communication in these communities is necessary to inform the design of information and communication technology (ICT) interventions that are relevant to older people and their peer supporters. OBJECTIVE:This study aims to use a two-phase, web-based ethnographic (netnography) and co-design approach to explore specific health care and self-care topics that older adults discuss in a UK-based online community and how peer supporters respond to these queries with informational and/or social support and engage with stakeholders to define the needs and requirements for new ICT-based interventions capable of reducing social isolation and facilitating LTC self-management support. METHODS:The first phase of the research will involve a qualitative netnographic analysis of posts in discussion forums in a publicly accessible online community. The second phase will involve co-design workshops with health care consumers (ie, older adults and carers) and service providers to determine the needs and requirements for new ICT-based interventions and digital innovations. Constructivist grounded theory will be used in the first phase; in the second phase, the co-design workshops will be audiorecorded and analyzed thematically. RESULTS:This research project is in progress. Permission was obtained from the website administrator to use materials from the social media forum; data collection for the first phase began in April 2020. The second phase of the study is expected to begin in late 2020. This study is due to be completed by the end of 2021. CONCLUSIONS:This study is the first, to the best of our knowledge, to combine qualitative netnography with an iterative co-design framework to specify the needs and requirements for new ICT-based interventions. The findings from this study will inform the next phase of the multiphase knowledge translation project and will provide insights into the potential of online peer health communities to reduce social isolation and facilitate chronic illness self-management support and self-care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):PRR1-10.2196/19834.

SUBMITTER: Lawless MT

PROVIDER: S-EPMC7522734 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Peer-to-Peer Health Communication in Older Adults' Online Communities: Protocol for a Qualitative Netnographic Study and Co-Design Approach.

Lawless Michael Thomas MT Archibald Mandy M Pinero de Plaza Maria Alejandra MA Drioli-Phillips Phoebe P Kitson Alison A

JMIR research protocols 20200914 9

<h4>Background</h4>Online communities provide an environment in which people with similar health concerns can interact and access content that can support the self-management of long-term conditions (LTCs). Recently, the importance of online social networks as sources of health information and social support has been brought into focus with the emergence and widespread societal impacts of COVID-19. Although online communities exist for older adults, little is known about the specific health and ...[more]

PMID: 32924960

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Project description:BackgroundThe use of online communities to promote end user involvement and co-creation in the product and service innovation process is well documented in the marketing and management literature. Whereas online communities are widely used for health care service provision and peer-to-peer support, only little is known about how they could be integrated into the health care innovation process.ObjectiveThe overall objective of this qualitative study was to explore community managers' views on and experiences with knowledge co-creation in online communities for people with disabilities.MethodsA descriptive qualitative research design was used. Data were collected through semi-structured interviews with nine community managers. To complement the interview data, additional information was retrieved from the communities in the form of structural information (number of registered users, number and names of topic areas covered by the forum) and administrative information (terms and conditions and privacy statements, forum rules). Data were analyzed using thematic analysis.ResultsOur results highlight two main aspects: peer-to-peer knowledge co-creation and types of collaboration with external actors. Although community managers strongly encouraged peer-to-peer knowledge co-creation, our findings indicated that these activities were not common practice in the communities under investigation. In fact, much of what related to co-creation, prototyping, and product development was still perceived to be directed by professionals and experts. Community managers described the role of their respective communities as informing this process rather than a driving force. The role of community members as advisors to researchers, health care professionals, and businesses was discussed in the context of types of collaboration with external actors. According to the community managers, most of the external inquiries related to research projects of students or health care professionals in training, who often joined a community for the sole purpose of recruiting participants for their research. Despite this unilateral form of knowledge co-creation, community managers acknowledged the mere interest of these user groups as beneficial, as long as their interest was not purely financially motivated. Being able to contribute to advancing research, improving products, and informing the planning and design of health care services were described as some of the key motivations to engage with external stakeholders.ConclusionsThis paper draws attention to the currently under-investigated role of online communities as platforms for collaboration and co-creation between patients, health care professionals, researchers, and businesses. It describes community managers' views on and experiences with knowledge co-creation and provides recommendations on how these activities can be leveraged to foster knowledge co-creation in health care. Engaging in knowledge co-creation with online health communities may ultimately help to inform the planning and design of products, services, and research activities that better meet the actual needs of those living with a disability.

Project description:IntroductionPeer online mental health forums are commonly used and offer accessible support. Positive and negative impacts have been reported by forum members and moderators, but it is unclear why these impacts occur, for whom and in which forums. This multiple method realist study explores underlying mechanisms to understand how forums work for different people. The findings will inform codesign of best practice guidance and policy tools to enhance the uptake and effectiveness of peer online mental health forums.Methods and analysisIn workstream 1, we will conduct a realist synthesis, based on existing literature and interviews with approximately 20 stakeholders, to generate initial programme theories about the impacts of forums on members and moderators and mechanisms driving these. Initial theories that are relevant for forum design and implementation will be prioritised for testing in workstream 2.Workstream 2 is a multiple case study design with mixed methods with several online mental health forums differing in contextual features. Quantitative surveys of forum members, qualitative interviews and Corpus-based Discourse Analysis and Natural Language Processing of forum posts will be used to test and refine programme theories. Final programme theories will be developed through novel triangulation of the data.Workstream 3 will run alongside workstreams 1 and 2. Key stakeholders from participating forums, including members and moderators, will be recruited to a Codesign group. They will inform the study design and materials, refine and prioritise theories, and codesign best policy and practice guidance.Ethics and disseminationEthical approval was granted by Solihull Research Ethics Committee (IRAS 314029). Findings will be reported in accordance with RAMESES (Realist And MEta-narrative Evidence Syntheses: Evolving Standards) guidelines, published as open access and shared widely, along with codesigned tools.Trial registration numberISRCTN 62469166; the protocol for the realist synthesis in workstream one is prospectively registered at PROSPERO CRD42022352528.

Project description:Modern healthcare is becoming increasingly technologized, knowledge-intensive, and specialized, which has consequences for communication between patients and practitioners in clinical encounters. Health information is increasingly accessible to patients through online resources. The objective of this paper is to provide an overview of existing studies that address how patients communicate with practitioners about online health information and to identify the key topics raised in these studies. With the concept of eHealth literacy as its point of departure, this paper specifically highlights the eHealth literacy topic of how patients comprehend, appraise and communicate online health information before and during the encounter with the healthcare professionals. In the literature search, we focus on qualitative studies that consider patients' and/or practitioners' reflections on online health information. We searched PUBMED, SCOPUS and Web of Science to capture research from various fields. Sixteen studies were included that met the following criteria: Qualitative study, focus on patient-practitioner communication, eHealth literacy and online information. The results show that the vast majority of studies were based on qualitative interviews, addressing patients' and practitioners' perspectives. Key topics in studies addressing patient perspectives were: reasons for seeking online information; calibrating understanding of online information with the practitioner; and barriers to discussing online information with practitioners. Key topics raised in studies focusing on practitioners were: trust in the patient and the online health information he/she presented as well as strategies to respond to patients who referred to online health information. The review highlights the need for further qualitative studies, preferably observational studies from authentic clinical communication situations, in order to capture how patients and practitioners communicate about online health information.

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.

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.

Dataset Information

Peer-to-Peer Health Communication in Older Adults' Online Communities: Protocol for a Qualitative Netnographic Study and Co-Design Approach.

Publications

Peer-to-Peer Health Communication in Older Adults' Online Communities: Protocol for a Qualitative Netnographic Study and Co-Design Approach.

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