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

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 (n = 9) hosted a priority-setting workshop to 1) unde...

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Autores principales: Nevin, Suzanne M., Wakefield, Claire E., Dadich, Ann, LeMarne, Fleur, Macintosh, Rebecca, Beavis, Erin, Sachdev, Rani, Bye, Ann, Nunn, Kenneth, Palmer, Elizabeth E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10194388/
https://www.ncbi.nlm.nih.gov/pubmed/37364015
http://dx.doi.org/10.1016/j.pecinn.2021.100014
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author Nevin, Suzanne M.
Wakefield, Claire E.
Dadich, Ann
LeMarne, Fleur
Macintosh, Rebecca
Beavis, Erin
Sachdev, Rani
Bye, Ann
Nunn, Kenneth
Palmer, Elizabeth E.
author_facet Nevin, Suzanne M.
Wakefield, Claire E.
Dadich, Ann
LeMarne, Fleur
Macintosh, Rebecca
Beavis, Erin
Sachdev, Rani
Bye, Ann
Nunn, Kenneth
Palmer, Elizabeth E.
author_sort Nevin, Suzanne M.
collection PubMed
description 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 (n = 9) hosted a priority-setting workshop to 1) understand parents' needs and preferences for psychological resources and 2) to develop ‘guiding principles’ to inform a future suite of psychological resources. The multidisciplinary panel analysed the parent priority-setting workshop data, using a combination of thematic and lexical analysis. RESULTS: Thematic analysis identified six key domains wherein parents (n = 8) prioritised a need for psychological resources to support adaptation to their child's genetic DEE diagnosis. Lexical analysis revealed that connection to diagnosis-specific resources provided a pathway to promote enhanced psychological adaptation, by reducing social isolation and reorienting parents towards feelings of hope. Combination of both analyses generated six thematic informed ‘guiding principles’. 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.
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spelling pubmed-101943882023-05-19 Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies Nevin, Suzanne M. Wakefield, Claire E. Dadich, Ann LeMarne, Fleur Macintosh, Rebecca Beavis, Erin Sachdev, Rani Bye, Ann Nunn, Kenneth Palmer, Elizabeth E. PEC Innov Full length article 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 (n = 9) hosted a priority-setting workshop to 1) understand parents' needs and preferences for psychological resources and 2) to develop ‘guiding principles’ to inform a future suite of psychological resources. The multidisciplinary panel analysed the parent priority-setting workshop data, using a combination of thematic and lexical analysis. RESULTS: Thematic analysis identified six key domains wherein parents (n = 8) prioritised a need for psychological resources to support adaptation to their child's genetic DEE diagnosis. Lexical analysis revealed that connection to diagnosis-specific resources provided a pathway to promote enhanced psychological adaptation, by reducing social isolation and reorienting parents towards feelings of hope. Combination of both analyses generated six thematic informed ‘guiding principles’. 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. Elsevier 2021-12-16 /pmc/articles/PMC10194388/ /pubmed/37364015 http://dx.doi.org/10.1016/j.pecinn.2021.100014 Text en © 2021 The Author(s) https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Full length article
Nevin, Suzanne M.
Wakefield, Claire E.
Dadich, Ann
LeMarne, Fleur
Macintosh, Rebecca
Beavis, Erin
Sachdev, Rani
Bye, Ann
Nunn, Kenneth
Palmer, Elizabeth E.
Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
title Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
title_full Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
title_fullStr Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
title_full_unstemmed Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
title_short Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
title_sort hearing parents' voices: a priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies
topic Full length article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10194388/
https://www.ncbi.nlm.nih.gov/pubmed/37364015
http://dx.doi.org/10.1016/j.pecinn.2021.100014
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