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Core elements to understand and improve coping with Parkinson's disease in patients and family carers: a focus group study

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: a focus group study
Core elements to understand and improve coping with Parkinson's disease in patients and family carers: a focus group study
Aims: 1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; 2) To suggest the components of an intervention focused on enhancing their coping with the disease.

Background: Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills.

Design: A sequential explanatory mixed-methods study was carried out. Findings from the qualitative phase are presented.

Methods: Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers.

Findings: The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed.

Conclusion: Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long term conditions.
0309-2402
Navarta-Sanchez, M. Victoria
27110875-8e86-4f88-ad68-c2996b08fbba
Caparrós, Neus
04cd1740-8695-4ac1-bac8-d80edfc7afe0
Fernandez, Mario Riverol
c86c29d0-015a-4e82-811f-966a53f8b39d
de Cerio Ayesa, Sara Díaz
4122bb03-a83e-4a32-8363-78f47f7ebf4c
Ursúa Sesma, María Eugenia
1d703b51-bd8c-4d1c-a6d5-5056c591c4c3
Portillo Vega, Maria
f913b5c5-b949-48f2-b1d0-eb7505484d5c
Navarta-Sanchez, M. Victoria
27110875-8e86-4f88-ad68-c2996b08fbba
Caparrós, Neus
04cd1740-8695-4ac1-bac8-d80edfc7afe0
Fernandez, Mario Riverol
c86c29d0-015a-4e82-811f-966a53f8b39d
de Cerio Ayesa, Sara Díaz
4122bb03-a83e-4a32-8363-78f47f7ebf4c
Ursúa Sesma, María Eugenia
1d703b51-bd8c-4d1c-a6d5-5056c591c4c3
Portillo Vega, Maria
f913b5c5-b949-48f2-b1d0-eb7505484d5c

Navarta-Sanchez, M. Victoria, Caparrós, Neus, Fernandez, Mario Riverol, de Cerio Ayesa, Sara Díaz, Ursúa Sesma, María Eugenia and Portillo Vega, Maria (2017) Core elements to understand and improve coping with Parkinson's disease in patients and family carers: a focus group study. Journal of Advanced Nursing. (doi:10.1111/jan.13335).

Record type: Article

Abstract

Aims: 1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; 2) To suggest the components of an intervention focused on enhancing their coping with the disease.

Background: Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills.

Design: A sequential explanatory mixed-methods study was carried out. Findings from the qualitative phase are presented.

Methods: Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers.

Findings: The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed.

Conclusion: Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long term conditions.

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Core elements to understand and improve coping with Parkinson's disease in patients and family carers: a focus group study - Accepted Manuscript
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More information

Accepted/In Press date: 11 May 2017
e-pub ahead of print date: 11 May 2017
Organisations: Bio-Behavioural Sciences

Identifiers

Local EPrints ID: 409764
URI: https://eprints.soton.ac.uk/id/eprint/409764
ISSN: 0309-2402
PURE UUID: c1bce38f-7673-4624-84be-174f26875bda
ORCID for Maria Portillo Vega: ORCID iD orcid.org/0000-0003-1583-6612

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Date deposited: 01 Jun 2017 04:07
Last modified: 03 Dec 2019 06:06

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