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Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease

Informal carers gain unique experience and knowledge when caring for a loved person. However, this knowledge often remains unused after their loved one with Parkinson’s disease (PD) has passed away. Hence, two opportunities are currently being missed: sharing this unique experience could support cur...

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Autores principales: Geerlings, Angelika D., Meinders, Marjan J., Bloem, Bastiaan R., van der Marck, Marjolein A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group UK 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9569356/
https://www.ncbi.nlm.nih.gov/pubmed/36243820
http://dx.doi.org/10.1038/s41531-022-00381-0
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author Geerlings, Angelika D.
Meinders, Marjan J.
Bloem, Bastiaan R.
van der Marck, Marjolein A.
author_facet Geerlings, Angelika D.
Meinders, Marjan J.
Bloem, Bastiaan R.
van der Marck, Marjolein A.
author_sort Geerlings, Angelika D.
collection PubMed
description Informal carers gain unique experience and knowledge when caring for a loved person. However, this knowledge often remains unused after their loved one with Parkinson’s disease (PD) has passed away. Hence, two opportunities are currently being missed: sharing this unique experience could support current informal carers and offer the bereaved former carers the option to continue to fulfil a meaningful role. This study aimed to identify the unmet needs of current carers, and to examine the interest, willingness and requirements of both current and former carers for peer-to-peer support. Data were collected from August 2020 to February 2021 through questionnaires examining (1) resources and needs for support; (2) topics for support and advice; and (3) preferences for peer-to-peer initiatives. Open questions were analyzed thematically, after open coding. In total, 141 current and 15 former informal carers participated. Current carers were mainly women (68%) and partner of a person with PD (86%). Former carers were mainly women (80%) who had cared for a partner or parent (53%; 47%) with PD. Almost half of the current carers expressed need for additional support in finding balance, changing relationships, and learning how to cope with lack of emotions and motivation. Half of the carers were positive about the opportunity to exchange experiences and knowledge with former carers. Willingness among former carers for providing peer-to-peer support was high (87%). In both groups, having a degree of commonality with peers was considered an essential requirement. These findings provide guidance for developing peer-to-peer support programs, incorporating former carers.
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spelling pubmed-95693562022-10-17 Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease Geerlings, Angelika D. Meinders, Marjan J. Bloem, Bastiaan R. van der Marck, Marjolein A. NPJ Parkinsons Dis Article Informal carers gain unique experience and knowledge when caring for a loved person. However, this knowledge often remains unused after their loved one with Parkinson’s disease (PD) has passed away. Hence, two opportunities are currently being missed: sharing this unique experience could support current informal carers and offer the bereaved former carers the option to continue to fulfil a meaningful role. This study aimed to identify the unmet needs of current carers, and to examine the interest, willingness and requirements of both current and former carers for peer-to-peer support. Data were collected from August 2020 to February 2021 through questionnaires examining (1) resources and needs for support; (2) topics for support and advice; and (3) preferences for peer-to-peer initiatives. Open questions were analyzed thematically, after open coding. In total, 141 current and 15 former informal carers participated. Current carers were mainly women (68%) and partner of a person with PD (86%). Former carers were mainly women (80%) who had cared for a partner or parent (53%; 47%) with PD. Almost half of the current carers expressed need for additional support in finding balance, changing relationships, and learning how to cope with lack of emotions and motivation. Half of the carers were positive about the opportunity to exchange experiences and knowledge with former carers. Willingness among former carers for providing peer-to-peer support was high (87%). In both groups, having a degree of commonality with peers was considered an essential requirement. These findings provide guidance for developing peer-to-peer support programs, incorporating former carers. Nature Publishing Group UK 2022-10-15 /pmc/articles/PMC9569356/ /pubmed/36243820 http://dx.doi.org/10.1038/s41531-022-00381-0 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Article
Geerlings, Angelika D.
Meinders, Marjan J.
Bloem, Bastiaan R.
van der Marck, Marjolein A.
Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease
title Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease
title_full Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease
title_fullStr Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease
title_full_unstemmed Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease
title_short Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease
title_sort using former carers’ expertise in peer support for carers of people with parkinson’s disease
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9569356/
https://www.ncbi.nlm.nih.gov/pubmed/36243820
http://dx.doi.org/10.1038/s41531-022-00381-0
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