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PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study

INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs). Evidence shows...

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Autores principales: Baptista Peixoto Befecadu, Filipa, Stirnemann, Jerome, Guerreiro, Ivan, Fusi-Schmidhauser, Tanja, Jaksic, Cyril, Larkin, Philip J, da Rocha Rodrigues, Gora, Pautex, Sophie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10186441/
https://www.ncbi.nlm.nih.gov/pubmed/37173103
http://dx.doi.org/10.1136/bmjopen-2022-068340
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author Baptista Peixoto Befecadu, Filipa
Stirnemann, Jerome
Guerreiro, Ivan
Fusi-Schmidhauser, Tanja
Jaksic, Cyril
Larkin, Philip J
da Rocha Rodrigues, Gora
Pautex, Sophie
author_facet Baptista Peixoto Befecadu, Filipa
Stirnemann, Jerome
Guerreiro, Ivan
Fusi-Schmidhauser, Tanja
Jaksic, Cyril
Larkin, Philip J
da Rocha Rodrigues, Gora
Pautex, Sophie
author_sort Baptista Peixoto Befecadu, Filipa
collection PubMed
description INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs). Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately. METHODS AND ANALYSIS: This is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL. Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation. ETHICS AND DISSEMINATION: This study protocol received ethical approval on 24 May 2022 from the Commission cantonale d'éthique de la recherche sur l'être humain—Canton of Vaud. The identification number is 2021-02477.
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spelling pubmed-101864412023-05-17 PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study Baptista Peixoto Befecadu, Filipa Stirnemann, Jerome Guerreiro, Ivan Fusi-Schmidhauser, Tanja Jaksic, Cyril Larkin, Philip J da Rocha Rodrigues, Gora Pautex, Sophie BMJ Open Respiratory Medicine INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs). Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately. METHODS AND ANALYSIS: This is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL. Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation. ETHICS AND DISSEMINATION: This study protocol received ethical approval on 24 May 2022 from the Commission cantonale d'éthique de la recherche sur l'être humain—Canton of Vaud. The identification number is 2021-02477. BMJ Publishing Group 2023-05-12 /pmc/articles/PMC10186441/ /pubmed/37173103 http://dx.doi.org/10.1136/bmjopen-2022-068340 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Respiratory Medicine
Baptista Peixoto Befecadu, Filipa
Stirnemann, Jerome
Guerreiro, Ivan
Fusi-Schmidhauser, Tanja
Jaksic, Cyril
Larkin, Philip J
da Rocha Rodrigues, Gora
Pautex, Sophie
PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study
title PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study
title_full PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study
title_fullStr PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study
title_full_unstemmed PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study
title_short PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study
title_sort pandora dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in switzerland – a multicentre longitudinal mixed-methods protocol study
topic Respiratory Medicine
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10186441/
https://www.ncbi.nlm.nih.gov/pubmed/37173103
http://dx.doi.org/10.1136/bmjopen-2022-068340
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