Evidence map›Paper›PMID 39520663›Full record

ArticleJournal of autism and developmental disorders2024

Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.

Elysa Eliopulos, Laura de la Roche, Yun-Ju Chen, Patrick McPhee, Anna Kata, Eric Duku, Caroline Roncadin, Lorraine Hoult, Deepa Singal, Stelios Georgiades

Abstract read
PubMed Publisher
In one paragraph

Article in Journal of autism and developmental disorders, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
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

1 citing paper in PubMed.

  1. 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

10 authors.

Elysa EliopulosDepartment of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada. elysaelio@gmail.com.ORCID http://orcid.org/0009-0002-3281-8934
Laura de la RocheDepartment of Psychology, Queen's University, Kingston, ON, Canada.
Yun-Ju ChenDepartment of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
Patrick McPheeDepartment of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
Anna KataDepartment of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
Eric DukuDepartment of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
Caroline RoncadinMcMaster Children's Hospital, Hamilton Health Sciences, Hamilton, ON, Canada.
Lorraine HoultMcMaster Children's Hospital, Hamilton Health Sciences, Hamilton, ON, Canada.
Deepa SingalManitoba Centre for Health Policy, University of Manitoba, Winnipeg, Canada.
Stelios GeorgiadesDepartment of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeAlthough participating in research is often presented as something that can 'help others in the future', research participants may also benefit from accessing and understanding their own research data. However, participant attitudes toward receiving individual data via research reports are under researched. This study examined participant perceptions of research reports within the context of the pilot phase of the Pediatric Autism Research Cohort (PARC) Study. PARC Study participants included caregivers of children with a recent diagnosis of autism, completing questionnaires on their child's symptoms and behaviours at six-month intervals for two years. Following completion of each timepoint, participants received a research summary report with information on their own child's developmental progress. Participants were invited to give feedback on their use of the reports after the pilot study.

methodsAn online questionnaire developed by the PARC Study research team to assess the use of PARC Study research summary reports was emailed to participants who received a report. Responses to the questionnaire (n = 39) were evaluated using descriptive analyses.

resultsMost participants reported that the reports improved their knowledge of autism and management/awareness of their child's needs. Reports were shared with professionals, leading to opportunities for dialogue and shared decision-making around intervention, social, and educational goals. Overall, participants expressed a preference for receiving such reports.

conclusionsThis work demonstrates positive perceptions and experiences with using research summary reports among participants in autism research. The provision of feedback/summary reports can enrich participant knowledge and serve as a resource to open dialogue with professionals.

Indexed as

AutismDevelopmental trajectoriesResearch feedbackResearch reports

Identifiers

PMID39520663

What OpenQuestion holds

Textmetadata
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.