Evidence map›Paper›PMID 37364015›Full record

ArticlePEC innovation2022

Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies.

Suzanne M Nevin, Claire E Wakefield, Ann Dadich, Fleur LeMarne, Rebecca Macintosh, Erin Beavis, Rani Sachdev, Ann Bye, Kenneth Nunn, Elizabeth E Palmer

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

Article in PEC innovation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
0.9field-weighted citation impact, top 23% 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

5 citing papers in PubMed, 7 citations in OpenAlex.

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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 at 4 institutions in 1 country.

Suzanne M NevinSchool of Women's and Children's Health, UNSW Medicine and Health, UNSW Sydney, Australia.
Claire E WakefieldSchool of Women's and Children's Health, UNSW Medicine and Health, UNSW Sydney, Australia.
Ann DadichSchool of Business, Western Sydney University, Locked Bag 1797, Penrith, NSW 2751, Australia.
Fleur LeMarneSchool of Women's and Children's Health, UNSW Medicine and Health, UNSW Sydney, Australia.
Rebecca MacintoshCentre for Clinical Genetics, Sydney Children's Hospital, Randwick, Australia.
Erin BeavisDepartment of Neurology, Sydney Children's Hospital, Randwick, Australia.
Rani SachdevSchool of Women's and Children's Health, UNSW Medicine and Health, UNSW Sydney, Australia.
Ann ByeSchool of Women's and Children's Health, UNSW Medicine and Health, UNSW Sydney, Australia.
Kenneth NunnDepartment of Psychological Medicine, Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Elizabeth E PalmerSchool of Women's and Children's Health, UNSW Medicine and Health, UNSW Sydney, Australia.
UNSW Sydney · AUSydney Children's Hospital · AUChildren's Hospital at Westmead · AUWestern Sydney University · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: To understand parents' of children with developmental and epileptic encephalopathies needs and preferences for psychological resources. Methods: Using a person-based approach, a multidisciplinary panel of clinician and researchers ( Results: Thematic analysis identified six key domains wherein parents ( Conclusion: Codesigned psychological resources may help parents to cope with the unique and complex interplay of stressors associated with their child's DEE diagnosis and treatment. Our 'guiding principles' will be translated to inform a future suite of tailored psychological resources. Innovation: This study demonstrates an innovative codesign approach to inform tailored psychological resources for families of children with rare genetic conditions.

Indexed as

CodesignParent mental healthPerson-basedPositive psychologyQualitative research

Identifiers

PMID37364015
PMCPMC10194388
OpenAlexW4200066696

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.