Evidence map›Paper›PMID 32540839›Full record

ArticleJMIR pediatrics and parenting2020

Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults Living With or Exposed to Perinatal HIV.

Claire A Berman, Deborah Kacanek, Mindy Nichamin, Dominique Wilson, Mariam Davtyan, Liz Salomon, Kunjal Patel, Megan Reznick, Katherine Tassiopoulos, Sonia Lee and 4 more

2 registry-linked trialsOpen access · goldAbstract read
In one paragraph

Article in JMIR pediatrics and parenting, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
4.1field-weighted citation impact, top 6% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT01418014 completednot on this map

Adolescent Master Protocol

TypeobservationalSponsorHarvard School of Public Health (HSPH)Ran2007 to 2021Enrolled678ConditionsHIV/AIDS
NCT02119702 completednot on this map

Adolescent Master Protocol for Participants 18 Years of Age and Older (AMP Up)

TypeobservationalSponsorHarvard School of Public Health (HSPH)Ran2014 to 2025Enrolled818ConditionsHIV/AIDS
3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 14 citations in OpenAlex.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors at 7 institutions in 1 country.

Claire A Berman *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0001-5719-8482
Deborah Kacanek *Center for Biostatistics in AIDS Research, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0002-4877-2646
Mindy Nichamin *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0002-3747-8548
Dominique Wilson *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0002-5521-6875
Mariam Davtyan *Department of Pediatrics, University of Southern California, Los Angeles, CA, United States.ORCID https://orcid.org/0000-0002-7902-2397
Liz Salomon *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0001-9952-0134
Kunjal Patel *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0003-0002-681X
Megan Reznick *Westat, Rockville, MD, United States.ORCID https://orcid.org/0000-0001-8463-6564
Katherine Tassiopoulos *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0003-4773-2535
Sonia Lee *Maternal and Pediatric Infectious Disease Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development, Bethesda, MD, United States.ORCID https://orcid.org/0000-0003-1024-3834
Jose Bauermeister *Center for AIDS Research, University of Pennsylvania School of Nursing, Philadelphia, PA, United States.ORCID https://orcid.org/0000-0002-9276-2306
Mary Paul *Texas Children's Hospital, Baylor College of Medicine, Houston, TX, United States.ORCID https://orcid.org/0000-0002-6885-2838
Theresa Aldape *Texas Children's Hospital, Baylor College of Medicine, Houston, TX, United States.ORCID https://orcid.org/0000-0002-3388-7758
George R Seage Iii *Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.ORCID https://orcid.org/0000-0001-5657-2970
Harvard University · USBaylor College of Medicine · USCancer Research And Biostatistics · USEunice Kennedy Shriver National Institute of Child Health and Human Development · USPenn Center for AIDS Research · USUniversity of Southern California · USWestat (United States) · US

Funding

PHACS - Data and Operations CenterU01HD052102 · NICHD · HARVARD UNIVERSITY (SCH OF PUBLIC HLTH) · PI WILLIAMS, PAIGE L · 2005 to 2019
$242.7M
Pediatric HIV/AIDS Cohort Study (PHACS): Understanding Maternal HIV Disease through Pregnancy and the Postpartum Period and its Role in Child Health OutcomesU01HD052104 · NICHD · TULANE UNIVERSITY OF LOUISIANA · PI VAN DYKE, RUSSELL B. · 2005 to 2019
$15.7M
NICHD NIH HHS U01 HD052102NICHD NIH HHS U01 HD052104
6 · The paper itself

Abstract

backgroundAs young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) grow older and manage the challenges and competing demands of young adulthood, new approaches are needed to facilitate their retention in longitudinal research and clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has underscored this need; studies are adapting to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults who are living with PHIV or PHEU.

objectiveThe objectives of this qualitative study were to describe participants' perceptions and use of social media and technology in their personal lives and in the context of participating in longitudinal pediatric HIV research and to describe the implications of the use of technology and social media for communication and retention purposes within a longitudinal pediatric study about HIV.

methodsWe conducted 6 focus group discussions with 31 young adults living with PHIV and 13 in-depth interviews with 6 young adults living with PHIV and 7 living with PHEU. We asked about their preferences for the use of social media and digital technology in the Adolescent Master Protocol, a US-based longitudinal cohort study of youth affected by HIV.

resultsParticipants' willingness to use social media platforms, telephone calls, SMS text messages, and video calls within the context of HIV research varied due to fears of HIV stigma and inadvertent disclosure. However, trusting relationships with clinical staff positively impacted their willingness to use these platforms.

conclusionsOur findings offer insight into how pediatric studies and clinics can communicate with participants as they age, even as new technologies and social media platforms emerge and replace old ones. For optimal retention, pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research.

Indexed as

COVID-19pediatric HIVperinatal HIVsocial mediastudy retentionyoung adultsyouth

Identifiers

PMID32540839
PMCPMC7313381
OpenAlexW3035291386

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.