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The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study

2024-08-14Journal article Open access
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dc.contributor.authorBefecadu, Filipa Baptista Peixoto
dc.contributor.authorGonçalves, Maria
dc.contributor.authorFernandes, Cláudia
dc.contributor.authorLaranjeira, Carlos
dc.contributor.authorDixe, Maria dos Anjos
dc.contributor.authorQuerido, Ana
dc.contributor.authorPautex, Sophie
dc.contributor.authorLarkin, Philip J.
dc.contributor.authorDa Rocha Rodrigues, Gora
dc.date.accessioned2024-09-10T18:42:05Z
dc.date.available2024-09-10T18:42:05Z
dc.date.issued2024-08-14
dc.descriptionFunding: Open access funding provided by University of Lausanne This study was funded by the SEED MONEY FOR JOINT SWISS-PORTUGUESE ACADEMIC PROJECTS on behalf of HEdS Haute école de Santé Genève, Suisse – HES-SO and Instituto Politécnico de Leiria – Escola Superior de Saúde, Leiria, Portugal. This work was also supported by FCT—Fundação para a Ciência e a Tecnologia, I.P. (UIDB/05704/2020 and UIDP/05704/2020) and by the Scientifc Employment Stimulus — Institutional Call — [https://doi.org/10.54499/ CEECINST/00051/2018/CP1566/CT0012].pt_PT
dc.description.abstractBackground Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. Methods We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients’ symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. Results Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included “Living one day at the time,” “Having inner force/strength,” and “Maintaining good health.” Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. Conclusions The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBefecadu, F. B. P., Gonçalves, M., Fernandes, C., Laranjeira, C., dos Anjos Dixe, M., Querido, A., Pautex, S., Larkin, P. J., & Da Rocha Rodrigues, G. (2024). The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study. BMC Palliative Care, 23(1), 1–20. https://doi.org/10.1186/s12904-024-01528-xpt_PT
dc.identifier.doihttps://doi.org/10.1186/s12904-024-01528-xpt_PT
dc.identifier.issn1472-684X
dc.identifier.urihttp://hdl.handle.net/10400.8/10035
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSpringer Naturept_PT
dc.relationCenter for Innovative Care and Health Technology
dc.relationCenter for Innovative Care and Health Technology
dc.relationNot Available
dc.relation.publisherversionhttps://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-024-01528-xpt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectHopept_PT
dc.subjectDyadpt_PT
dc.subjectChronic illnesspt_PT
dc.subjectPalliative carept_PT
dc.subjectMixed methodspt_PT
dc.subjectEnd-of-lifept_PT
dc.titleThe experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleCenter for Innovative Care and Health Technology
oaire.awardTitleCenter for Innovative Care and Health Technology
oaire.awardTitleNot Available
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F05704%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDP%2F05704%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/CEEC INST 2018/CEECINST%2F00051%2F2018%2FCP1566%2FCT0012/PT
oaire.citation.issue1pt_PT
oaire.citation.startPage207pt_PT
oaire.citation.titleBMC Palliative Carept_PT
oaire.citation.volume23pt_PT
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStreamCEEC INST 2018
person.familyNameLaranjeira
person.familyNameDixe
person.familyNameQuerido
person.givenNameCarlos
person.givenNameMaria dos Anjos
person.givenNameAna
person.identifier794059
person.identifier.ciencia-idDB15-BD76-2B75
person.identifier.ciencia-idE311-0BBA-444F
person.identifier.orcid0000-0003-1080-9535
person.identifier.orcid0000-0001-9035-8548
person.identifier.orcid0000-0002-5021-773X
person.identifier.ridB-9257-2018
person.identifier.scopus-author-id22957802900
person.identifier.scopus-author-id55885797900
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
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