Evidence map›Paper›PMID 38238837›Full record

ArticleResearch involvement and engagement2024

Disseminating the research findings from the adolescents and adults living with Perinatal HIV (AALPHI) study: an approach from young people living with HIV.

Kate Sturgeon, Ali Judd, Tom Burke, Caroline Foster, Diana M Gibb, Marthe Le Prevost, Warren Mhizha, Conor D Tweed

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed, 2 pooled it
1.2field-weighted citation impact, top 25% 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 2 syntheses or guidelines pooled it, 3 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Article
  4. 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

8 authors at 4 institutions in 1 country.

Kate SturgeonMRC Clinical Trials Unit at University College London, London, UK. k.sturgeon@ucl.ac.uk.
Ali JuddMRC Clinical Trials Unit at University College London, London, UK.
Tom BurkeAmplify Consultancy, London, UK.
Caroline FosterImperial College Healthcare NHS Trust, London, UK.
Diana M GibbMRC Clinical Trials Unit at University College London, London, UK.
Marthe Le PrevostMRC Clinical Trials Unit at University College London, London, UK.
Warren MhizhaYouth Trials Board, London, UK.
Conor D TweedMRC Clinical Trials Unit at University College London, London, UK.
MRC Clinical Trials Unit at UCL · GBUniversity College London · GBBritish HIV Association · GBImperial College Healthcare NHS Trust · GB

Funding

Medical Research Council MC_U122886353Medical Research Council MC_UU_00004/03Medical Research Council MC_UU_00004/08Medical Research Council MC_UU_12023/17Medical Research Council MC_UU_12023/26
6 · The paper itself

Abstract

backgroundThe Adolescents and Adults Living with Perinatal HIV (AALPHI) study is one of only three cohort studies worldwide evaluating the impact of HIV on young people living with perinatal HIV (PLHIV) relative to a comparable group of HIV negative young people in close relationship with an HIV positive individual, for example, their mother, sibling or partner. This project aimed to engage young people with the AALPHI study findings, help them take ownership, and decide how they would disseminate the key messages to both study participants and to the wider community.

methodsIn brief, 318 PLHIV and 100 HIV negative adolescents participated in AALPHI, where they each were interviewed twice, around two years apart. They were asked a wide range of psychosocial and risk behaviour questions and their cognitive function was assessed. We invited three AALPHI participants and seven members of the Youth Trials Board at the Children's HIV Association (CHIVA) to attend up to four workshops. They were provided with the key AALPHI research findings and asked to develop them into a format that was accessible and understandable for young people. Some who had not participated before formed a group in the fourth dissemination workshop that confirmed the most important concepts and results.

resultsThe young people decided to develop a film and a leaflet about the AALPHI findings and co-produced them with a film maker and graphic designer. Challenges included working with the film maker and the venue for the first three dissemination workshops was an office space which was not ideal.

conclusionEngaging young people in the dissemination of the AALPHI findings ensured the results were communicated in a way that was more likely to be relevant, accessible and useful to those affected by the study. This project demonstrates how young people in potentially stigmatised areas of care, such as HIV, can be involved in research dissemination.

Indexed as

Co-productionDissemination of researchHIVPatient and public involvementYoung people

Identifiers

PMID38238837
PMCPMC10797962
OpenAlexW4390985847

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.