Perspectives of people with Parkinson's disease and family carers about disease management in community settings: a cross‐country qualitative study
Perspectives of people with Parkinson's disease and family carers about disease management in community settings: a cross‐country qualitative study
Aim: to explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease.
Background: resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting.
Design: a qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ.
Methods: individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings.
Results: forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management.
Conclusions: an integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions.
Patient or Public Contribution: the Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.
Parkinson's disease, integrated care, long-term conditions, management, multisectoral action, nursing, patient experience, patient involvement, personalised care, qualitative research
5201-5218
Navarta‐sánchez, M. Victoria
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Palmar‐santos, Ana
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Pedraz‐marcos, Azucena
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Reidy, Claire
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Soilemezi, Dia
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Haahr, Anita
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Sørensen, Dorthe
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Smidt, Helle Rønn
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Bragstad, Line Kildal
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Hjelle, Ellen Gabrielsen
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Haavaag, Silje Bjørnsen
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Portillo, Mari Carmen
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August 2023
Navarta‐sánchez, M. Victoria
5d227f61-ce12-4718-978d-fcdfebc02013
Palmar‐santos, Ana
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Pedraz‐marcos, Azucena
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Reidy, Claire
afb521f8-99d0-4315-9a30-d2f478d3f30c
Soilemezi, Dia
74f20da9-6646-419a-bec3-d34348bfaa3c
Haahr, Anita
a10458a2-592d-4afa-adc6-ee562cb9929e
Sørensen, Dorthe
5713f907-ffb7-4e13-8416-a8c0c6ca2d73
Smidt, Helle Rønn
55ef6fdc-7f94-4a43-9d14-7b1c67108fd6
Bragstad, Line Kildal
eb5f184e-f4d8-45c2-8e42-c614fd658f75
Hjelle, Ellen Gabrielsen
c6a9d41c-70ad-4f97-8b42-ad4e4093d9fd
Haavaag, Silje Bjørnsen
cc0f4de2-0f03-40aa-b881-48a95e33751c
Portillo, Mari Carmen
f913b5c5-b949-48f2-b1d0-eb7505484d5c
Navarta‐sánchez, M. Victoria, Palmar‐santos, Ana, Pedraz‐marcos, Azucena, Reidy, Claire, Soilemezi, Dia, Haahr, Anita, Sørensen, Dorthe, Smidt, Helle Rønn, Bragstad, Line Kildal, Hjelle, Ellen Gabrielsen, Haavaag, Silje Bjørnsen and Portillo, Mari Carmen
(2023)
Perspectives of people with Parkinson's disease and family carers about disease management in community settings: a cross‐country qualitative study.
Journal of Clinical Nursing, 32 (15-16), .
(doi:10.1111/jocn.16636).
Abstract
Aim: to explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease.
Background: resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting.
Design: a qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ.
Methods: individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings.
Results: forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management.
Conclusions: an integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions.
Patient or Public Contribution: the Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.
Text
Journal of Clinical Nursing - 2023 - Navarta‐S nchez - Perspectives of people with Parkinson s disease and family carers
- Version of Record
More information
Accepted/In Press date: 6 January 2023
e-pub ahead of print date: 2 February 2023
Published date: August 2023
Additional Information:
Funding Information:
This work was supported by the EU Joint Programme – Neurodegenerative Disease Research (JPND). In Norway, the work was funded by the Research Council of Norway (grant number: 299762) and the DAM Foundation (project number FO296567). In Denmark, the work was funded by Innovation Fund Denmark. In the United Kingdom, the work was funded by the Alzheimer´s Society (grant number: 470). The Autonomous University of Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan) were the financing entities of the researcher M V Navarta‐Sánchez (Grant number: CA2/RSUE/2021‐00854).
Funding Information:
We want to thank the Norwegian Parkinson's Association, Danish Parkinson's disease association and Dr Lydia Lopez Manzanares and Beatriz Gonzalez (Hospital Universitario de La Princesa) for their assistance in this study in Norway, Denmark and Spain. Thanks are given to the NIHR Applied Research Collaboration Wessex for their support in this study in the United Kingdom. We would also like to thank the participants and the PPI representatives in all countries for their contribution to the study.
Publisher Copyright:
© 2023 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Keywords:
Parkinson's disease, integrated care, long-term conditions, management, multisectoral action, nursing, patient experience, patient involvement, personalised care, qualitative research
Identifiers
Local EPrints ID: 475124
URI: http://eprints.soton.ac.uk/id/eprint/475124
ISSN: 0962-1067
PURE UUID: bca0cb2d-d8b8-489a-b117-a93cd6d6e221
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Date deposited: 10 Mar 2023 17:36
Last modified: 17 Mar 2024 03:37
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Contributors
Author:
M. Victoria Navarta‐sánchez
Author:
Ana Palmar‐santos
Author:
Azucena Pedraz‐marcos
Author:
Claire Reidy
Author:
Dia Soilemezi
Author:
Anita Haahr
Author:
Dorthe Sørensen
Author:
Helle Rønn Smidt
Author:
Line Kildal Bragstad
Author:
Ellen Gabrielsen Hjelle
Author:
Silje Bjørnsen Haavaag
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