Dataset Information

Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study.

ABSTRACT:

Background

The 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.

Objective

The 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.

Methods

A 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.

Results

Our 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.

Conclusions

This 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.

SUBMITTER: Amann J

PROVIDER: S-EPMC5654737 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

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Publications

Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study.

Amann Julia J Rubinelli Sara S

Journal of medical Internet research 20171010 10

<h4>Background</h4>The 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.<h4>Objective</h4>The overall objective of this qualitative study was to explore community mana ...[more]

PMID: 29017993

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Project description:BackgroundMental ill-health is one of the most significant health and social issues affecting young people globally. To address the mental health crisis, a number of cross-sectoral research and action priorities have been identified. These include improving mental health literacy, translating research findings into accessible public health outputs, and the use of digital technologies. There are, however, few examples of public health-oriented knowledge transfer activities involving collaborations between researchers, the Arts, and online platforms in the field of youth mental health.ObjectiveThe primary aim of this project was to translate qualitative research findings into a series of online public mental health animations targeting young people between the ages of 16 and 25 years. A further aim was to track online social media engagement and viewing data for the animations for a period of 12 months.MethodsQualitative data were collected from a sample of 17 youth in Ireland, aged 18-21 years, as part of the longitudinal population-based Adolescent Brain Development study. Interviews explored the life histories and the emotional and mental health of participants. The narrative analysis revealed 5 thematic findings relating to young people's emotional and mental health. Through a collaboration between research, the Arts, and the online sector, the empirical thematic findings were translated into 5 public health animations. The animations were hosted and promoted on 3 social media platforms of the Irish youth health website called SpunOut. Viewing data, collected over a 12-month period, were analyzed to determine the reach of the animations.ResultsNarrative thematic analysis identified anxiety, depression, feeling different, loneliness, and being bullied as common experiences for young people. These thematic findings formed the basis of the animations. During the 12 months following the launch of the animations, they were viewed 15,848 times. A majority of views occurred during the period of the social media ad campaign at a cost of €0.035 (approximately US $0.042) per view. Animations on feeling different and being bullied accounted for the majority of views.ConclusionsThis project demonstrates that online animations provide an accessible means of translating empirical research findings into meaningful public health outputs. They offer a cost-effective way to provide targeted online information about mental health, coping, and help-seeking to young people. Cross-sectoral collaboration is required to leverage the knowledge and expertise required to maximize the quality and potential reach of any knowledge transfer activities. A high level of engagement is possible by targeting non-help-seeking young people on their native social media platforms. Paid promotion is, therefore, an important consideration when budgeting for online knowledge translation and dissemination activities in health research.

Project description:BACKGROUND:During pregnancy, childbirth and puerperium, women receive care from a range of health professionals, particularly midwives. To assess the current situation of maternity care for women with physical disabilities in Austria, this study investigated the perceptions and experiences of health professionals who have provided care for women with disabilities during pregnancy, childbirth and postpartum. METHODS:The viewpoints of the participating health professionals were evaluated by means of semistructured interviews followed by an inductive qualitative content analysis of the interview transcripts, as proposed by Mayring. RESULTS:Four main categories emerged from the inductive content analysis: (i) structural conditions and accessibility, (ii) interprofessional teamwork and cooperation, (iii) action competence, and (iv) diversity-sensitive attitudes. According to the participating health professionals, the structural conditions were frequently not suitable for providing targeted group-oriented care services. Additionally, a shortage of time and staff resources also limited the necessary flexibility of treatment measures in the care of mothers with physical disabilities. The importance of interprofessional teamwork for providing adequate care was highlighted. The health professionals regarded interprofessionalism as an instrument of quality assurance and team meetings as an elementary component of high-quality care. On the other hand, the interviewees perceived a lack of action competence that was attributed to a low number of cases and a corresponding lack of experience and routine. Regarding diversity-sensitive attitudes, it became apparent that the topic of mothers with physical disabilities in care posed challenges to health professionals that influenced their natural handling of the interactions. CONCLUSION:The awareness of one's own attitudes towards diversity, in the perinatal context in particular, influences professional security and sovereignty as well as the quality of care of women with disabilities. There is a need for optimization in the support and care of women with physical disabilities during pregnancy, childbirth and puerperium.

Project description:IntroductionWhile the rapid expansion in antiretroviral therapy access in low and middle income countries has resulted in dramatic declines in mortality rates, many people living with HIV face new or worsening experiences of disability. As nearly 1 in 20 adults are living with HIV in sub-Saharan Africa-many of whom are likely to develop disabling sequelae from long-term infection, co-morbidities and side effects of their treatment-understanding the availability and accessibility of services to address HIV-related disabilities is of vital importance. The aim of this study thus is to explore knowledge of HIV-related disabilities amongst stakeholders working in the fields of HIV and disability and factors impacting uptake and provision of interventions for preventing, treating or managing HIV-related disabilities.MethodsIn-depth, semi-structured interviews were conducted with ten stakeholders based in Harare, Zimbabwe, who were working in the fields of either disability or HIV. Stakeholders were identified through a priori stakeholder analysis. Thematic Analysis, complemented by constant comparison as described in Grounded Theory, was used to analyse findings.ResultsAll key informants reported some level of knowledge of HIV-related disability, mostly from observations made in their line of work. However, they reported no interventions or policies were in place specifically to address HIV-related disability. While referrals between HIV and rehabilitation providers were not uncommon, no formal mechanisms had been established for collaborating on prevention, identification and management. Additional barriers to accessing and providing services to address HIV-related disabilities included: the availability of resources, including trained professionals, supplies and equipment in both the HIV and rehabilitation sectors; lack of disability-inclusive adaptations, particularly in HIV services; heavy centralization of available services in urban areas, without accessible, affordable transportation links; and attitudes and understanding among service providers and people living with HIV-related disabilities.ConclusionsAs people living with HIV are surviving longer, HIV-related disabilities will become a major source of disability globally, particularly in sub-Saharan Africa where infection is endemic. Preventing, treating and managing HIV-related disabilities must become a key component of both HIV response efforts and rehabilitation strategies.

Project description: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.

Dataset Information

Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study.

Background

Objective

Methods

Results

Conclusions

Publications

Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study.

Similar Datasets

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