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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: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: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:BackgroundChildren with osteogenesis imperfecta (OI) experience a diversity of symptoms that expose them to difficult physical, mental, and social challenges. Sisom (DHealth) is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic conditions express their symptoms. Recently, the co-design of the Sisom OI paper prototype was launched by seeking the perspectives of end users, including children with OI and their clinicians.ObjectiveThe aim of this study is to describe the experiences that children with OI were prompted to share with researchers during the co-design of the Sisom OI paper prototype.MethodsA secondary analysis of qualitative data was conducted at a university-affiliated, pediatric, orthopedic hospital. The data sources consisted of interview transcripts, drawings, field notes, and observations derived from interviewing 12 children with OI who participated in the co-design of the Sisom OI paper prototype. The themes and subthemes identified from the data sources were generated using qualitative description.ResultsThree themes were identified. The first, Relating to Others, described the balance between feeling different versus feeling similar to other children. The subthemes were Common OI Experience, Feeling Different, and Feeling Just Like Others. The second, Relating to Their Condition, described children's positive and negative interactions with their own condition and health care. The subthemes were Understanding Their Condition, Special Relationship with the Hospital, and Difficult Treatments and Procedures. The third, Reflecting on Capabilities, described children's recognition of their strengths and limitations. The subthemes were Perceiving Limitations, Overcoming Isolation, and Celebrating Strengths.ConclusionsThis co-design process provided children with OI the space to not only contribute to the development of the end product but also eloquently describe their experiences. These findings, based on the descriptions given by the children themselves, offer us a unique understanding of what it means to grow up with OI.

Project description:BackgroundOnline support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement.ObjectiveThe objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs.MethodsA search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively.ResultsWe examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement.ConclusionsAcross a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs.Trial registrationPROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326.

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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