Changes in Cancer Patients' and Caregivers' Disease Perceptions While Receiving Early Palliative Care: A Qualitative and Quantitative Analysis.

Caregivers Early palliative care Pain Patients Qualitative research Quantitative tool

Journal

The oncologist
ISSN: 1549-490X
Titre abrégé: Oncologist
Pays: England
ID NLM: 9607837

Informations de publication

Date de publication:
12 2021
Historique:
received: 28 06 2021
accepted: 18 08 2021
pubmed: 13 9 2021
medline: 22 12 2021
entrez: 12 9 2021
Statut: ppublish

Résumé

Little is known about the underlying mechanisms through which early palliative care (EPC) improves multiple outcomes in patients with cancer and their caregivers. The aim of this study was to qualitatively and quantitatively analyze patients' and caregivers' thoughts and emotional and cognitive perceptions about the disease prior to and during the EPC intervention, and in the end of life, following the exposure to EPC. Seventy-seven patients with advanced cancer and 48 caregivers from two cancer centers participated in semistructured interviews. Their reports were qualitatively and quantitatively analyzed by the means of the grounded theory and a text-analysis program. Participants reported their past as overwhelmed by unmanaged symptoms, with detrimental physical and psychosocial consequences. The EPC intervention allowed a prompt resolution of symptoms and of their consequences and empowerment, an appreciation of its multidimensional approach, its focus on the person and its environment, and the need for EPC for oncologic populations. Patients reported that conversations with the EPC team increased their acceptance of end of life and their expectation of a painless future. Quantitative analysis revealed higher use of Negative Affects (p < .001) and Biological Processes words (p < .001) when discussing the past; Agency words when discussing the present (p < .001); Positive Affects (p < .001), Optimism (p = .002), and Insight Thinking words (p < .001) when discussing the present and the future; and Anxiety (p = .002) and Sadness words (p = .003) when discussing the future. Overall, participants perceived EPC to be beneficial. Our findings suggest that emotional and cognitive processes centered on communication underlie the benefits experienced by participants on EPC. By qualitative and quantitative analyses of the emotional and cognitive perceptions of cancer patients and their caregivers about their experiences before and during EPC interventions, this study may help physicians/nurses to focus on the disease perception by patients/caregivers and the benefits of EPC, as a standard practice. The analysis of words used by patients/caregivers provides a proxy for their psychological condition and support in tailoring an EPC intervention, based on individual needs. This study highlights that the relationship of the triad EPC team/patients/caregivers may rise as a therapeutic tool, allowing increasing awareness and progressive acceptance of the idea of death.

Sections du résumé

BACKGROUND
Little is known about the underlying mechanisms through which early palliative care (EPC) improves multiple outcomes in patients with cancer and their caregivers. The aim of this study was to qualitatively and quantitatively analyze patients' and caregivers' thoughts and emotional and cognitive perceptions about the disease prior to and during the EPC intervention, and in the end of life, following the exposure to EPC.
MATERIALS AND METHODS
Seventy-seven patients with advanced cancer and 48 caregivers from two cancer centers participated in semistructured interviews. Their reports were qualitatively and quantitatively analyzed by the means of the grounded theory and a text-analysis program.
RESULTS
Participants reported their past as overwhelmed by unmanaged symptoms, with detrimental physical and psychosocial consequences. The EPC intervention allowed a prompt resolution of symptoms and of their consequences and empowerment, an appreciation of its multidimensional approach, its focus on the person and its environment, and the need for EPC for oncologic populations. Patients reported that conversations with the EPC team increased their acceptance of end of life and their expectation of a painless future. Quantitative analysis revealed higher use of Negative Affects (p < .001) and Biological Processes words (p < .001) when discussing the past; Agency words when discussing the present (p < .001); Positive Affects (p < .001), Optimism (p = .002), and Insight Thinking words (p < .001) when discussing the present and the future; and Anxiety (p = .002) and Sadness words (p = .003) when discussing the future.
CONCLUSION
Overall, participants perceived EPC to be beneficial. Our findings suggest that emotional and cognitive processes centered on communication underlie the benefits experienced by participants on EPC.
IMPLICATIONS FOR PRACTICE
By qualitative and quantitative analyses of the emotional and cognitive perceptions of cancer patients and their caregivers about their experiences before and during EPC interventions, this study may help physicians/nurses to focus on the disease perception by patients/caregivers and the benefits of EPC, as a standard practice. The analysis of words used by patients/caregivers provides a proxy for their psychological condition and support in tailoring an EPC intervention, based on individual needs. This study highlights that the relationship of the triad EPC team/patients/caregivers may rise as a therapeutic tool, allowing increasing awareness and progressive acceptance of the idea of death.

Identifiants

pubmed: 34510624
doi: 10.1002/onco.13974
pmc: PMC8649024
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e2274-e2287

Informations de copyright

© 2021 The Authors. The Oncologist published by Wiley Periodicals LLC on behalf of AlphaMed Press.

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Auteurs

Eleonora Borelli (E)

Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, Modena, Italy.

Sarah Bigi (S)

Department of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, Milan, Italy.

Leonardo Potenza (L)

Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, Modena, Italy.
Hematology Unit and Chair, Azienda Ospedaliera Universitaria di Modena, Modena, Italy.

Sonia Eliardo (S)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Fabrizio Artioli (F)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Claudia Mucciarini (C)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Luca Cottafavi (L)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Katia Cagossi (K)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Giorgia Razzini (G)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Massimiliano Cruciani (M)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Alessandra Pietramaggiori (A)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Valeria Fantuzzi (V)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Laura Lombardo (L)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Umberto Ferrari (U)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

Vittorio Ganfi (V)

Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, Modena, Italy.

Fausta Lui (F)

Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy.
Center for Neuroscience and Neurotechnology, University of Modena and Reggio Emilia, Modena, Italy.

Oreofe Odejide (O)

Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Cristina Cacciari (C)

Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy.
Center for Neuroscience and Neurotechnology, University of Modena and Reggio Emilia, Modena, Italy.

Carlo Adolfo Porro (CA)

Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy.
Center for Neuroscience and Neurotechnology, University of Modena and Reggio Emilia, Modena, Italy.

Camilla Zimmermann (C)

Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.
University of Toronto, Toronto, Ontario, Canada.

Fabio Efficace (F)

Health Outcomes Research Unit, Italian Group for Adult Hematologic Diseases (GIMEMA), Rome, Italy.

Eduardo Bruera (E)

Palliative Care & Rehabilitation Medicine, UT MD Anderson Cancer Center, Houston, Texas, USA.

Mario Luppi (M)

Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, Modena, Italy.
Hematology Unit and Chair, Azienda Ospedaliera Universitaria di Modena, Modena, Italy.

Elena Bandieri (E)

Oncology and Palliative Care Units, Civil Hospital Carpi, USL, Carpi, Italy.

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