Social Support in a Virtual Community: Analysis of a Clinic-Affiliated Online Support Group for Persons Living with HIV/AIDS

Flickinger, Tabor; DeBolt, Claire; Waldman, Ava Lena; Reynolds, George; Cohn, Wendy F.; Beach, Mary Catherine; Ingersoll, Karen S.; Dillingham, Rebecca

doi:10.1007/s10461-016-1587-3

Cited by 66 publications

(66 citation statements)

References 37 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Two iterations of the PL app were used during this study: PL 1.0 (launched September 2013) and PL 2.0 (launched June 2016). Details of the development of PL 1.0 and its preliminary findings have been previously published, including a summary of early formative and pilot work and qualitative assessments of PL users and features [24][25][26][27][28]. PL 2.0 was developed as a result of feedback from usability interviews with PL participants ("members") and providers.…”

Section: Positivelinks Interventionmentioning

confidence: 99%

Long term impact of PositiveLinks: Clinic-deployed mobile technology to improve engagement with HIV care

et al. 2020

Self Cite

View full text Add to dashboard Cite

Background PositiveLinks (PL) is a smartphone-based platform designed in partnership with people living with HIV (PLWH) to improve engagement in care. PL provides daily medication reminders, check-ins about mood and stress, educational resources, a community message board, and an ability to message providers. The objective of this study was to evaluate the impact of up to 24 months of PL use on HIV viral suppression and engagement in care and to examine whether greater PL use was associated with improved outcomes. Setting This study occurred between September 2013 and March 2017 at a university-based Ryan White HIV clinic. Methods We assessed engagement in care and viral suppression from study baseline to the 6-, 12-, 18-and 24-month follow-up time periods and compared trends among high vs. low PL users. We compared time to viral suppression, proportion of days virally suppressed, and time to engagement in care in patients with high vs. low PL use. Results 127 patients enrolled in PL. Engagement in care and viral suppression improved significantly after 6 months of PL use and remained significantly improved after 24 months. Patients with high PL use were 2.09 (95% CI 0.64-6.88) times more likely to achieve viral suppression and 1.52 (95% CI 0.89-2.57) times more likely to become engaged in care compared to those with low PL use.

show abstract

Section: Positivelinks Interventionmentioning

confidence: 99%

Long term impact of PositiveLinks: Clinic-deployed mobile technology to improve engagement with HIV care

et al. 2020

Self Cite

View full text Add to dashboard Cite

show abstract

“…Although there are limitations regarding confidentiality or privacy and the validity of information being shared through social media, the online space has allowed patients not only to have greater access to health information but also to benefit from increased social and emotional support (Moorhead et al 2013). There are online forums dedicated to all types of health issues, including cancer, arthritis, HIV/AIDS, ankylosing spondylosis, epilepsy, and fibromyalgia (Flickinger et al 2017;van Uden-Kraan et al 2008;White and Dorman 2001). Some sites also include chat rooms to foster greater discussion among researchers, patients, and health care providers.…”

Section: Contextualization: From Citizen Protests To Institutionalizementioning

confidence: 99%

Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?

Smith

Bélisle-Pipon²,

Resnik

2019

Citizen Science: Theory and Practice

View full text Add to dashboard Cite

Science refers to the consultation, participation, engagement or involvement of the general public in research. Rationales for this interaction include increased public access and involvement of citizens in research, immersion of community values relevant to research, outreach, and educational potential with the public, and ultimately, the democratization of science. This paper focuses on the specific subset of citizen science that seeks to engage "patient partners" in health research to gain the valuable experiential knowledge of those living with a disease. Greater patient engagement in research (PER) can provide researchers with insights about citizen values and needs relevant to determining research priorities, methodology, applications, and ethical parameters; this would ideally lead to more effective real-world applications. Over the last decade, projects involving patients partners in research (PPRs) have varied from mere tokenism and undervaluation to full involvement and empowerment of patient participantsthe former, a subject of criticism, and the latter, promoted as an ideal. In this article, we will argue that the value of that experiential knowledge from PPRs should not only be acknowledged through its ongoing use, but also through recognition of participants who contribute to the creation and application of new knowledge. We will explore types of recognition that might be attributed to PPRs, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the beneficial outcomes of research applications. We also will consider whether such types of recognition could be applied to the broader field of citizen science.

show abstract

“…(19,20) Their use can help clients to make choices about their mental and physical health, have a positive view of life, and avoid risk behaviors. (8) According to the experts' evaluations, the topics of the messages were considered very relevant to promote health in PLWHA, corroborating national guidelines focused on that audience.…”

Section: Discussionmentioning

confidence: 99%

Validação de mensagens telefônicas para promoção da saúde de pessoas com HIV

et al. 2017

View full text Add to dashboard Cite

Objective: To evaluate the opinion of experts about the content of phone messages to promote health in people with HIV. Methods: Methodological development study to validate 10 phone messages, with participation of 11 experts that assessed their clarity and relevance. The content validity index of each phone message was calculated and a minimum concordance of 75% was established. Results: The messages were considered clear (79.1%) and very relevant (98.2%). The general content validity index was 0.98. Main suggested alterations: inclusion of a series of short questions about the subject at the beginning of every message; adjustment to a simpler and more interactive language; replacement of specific terms and exclusion of words or expressions related to HIV. Conclusion: The experts considered the messages clear and relevant to promote health in people with HIV. ResumoObjetivo: Avaliar a opinião de experts sobre o conteúdo de mensagens telefônicas para a promoção da saúde de pessoas vivendo com HIV. Métodos: Estudo de desenvolvimento metodológico direcionado à validação de dez mensagens telefônicas, com participação de 11 experts que avaliaram sua clareza e grau de relevância. O índice de validade de conteúdo relativo a cada mensagem foi calculado e estabeleceu-se uma concordância mínima de 75%. Resultados: Foram consideradas mensagens claras (79,1%) e muito relevantes (98,2%). O índice de validade de conteúdo geral foi 0,98. Principais alterações sugeridas: inclusão de um questionamento sobre o tema no início de cada mensagem; adequação para uma linguagem mais simples e interativa; substituição de termos específicos e exclusão de palavras ou expressões relacionadas ao HIV. Conclusão: Os experts consideraram as mensagens claras e relevantes para a promoção da saúde das pessoas vivendo com HIV.

show abstract

Social Support in a Virtual Community: Analysis of a Clinic-Affiliated Online Support Group for Persons Living with HIV/AIDS

Cited by 66 publications

References 37 publications

Long term impact of PositiveLinks: Clinic-deployed mobile technology to improve engagement with HIV care

Long term impact of PositiveLinks: Clinic-deployed mobile technology to improve engagement with HIV care

Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?

Validação de mensagens telefônicas para promoção da saúde de pessoas com HIV

Contact Info

Product

Resources

About