Enlightening chronic obstructive pulmonary disease through patients&amp;rsquo; and caregivers&amp;rsquo; narratives

Gatti, Valeria; Banfi, Paolo; Centanni, Stefano; D’Antonio, Salvatore; Giustini, Saffi Ettore; Piraino, Alessio; Zibellini, Marco; Marini, Maria Giulia

doi:10.2147/copd.s172214

Cited by 18 publications

(18 citation statements)

References 42 publications

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“…However, very few studies focus on these patients' emotional distress in the end-of-life stage and their main family caregivers as a dyad. The available data are found in studies of family caregivers of patients with a wide range of pathologies, including COPD [5,27]. It is important to note that COPD is characterized by long, progressive deterioration interrupted by periodic crises, which alternate with periods of stability.…”

Section: Introductionmentioning

confidence: 99%

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

Soto‐Rubio¹,

Valero‐Moreno²,

Palencia³

et al. 2020

PLoS ONE

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Background Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers. Methods Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out. Results Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness. Conclusions The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.

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Section: Introductionmentioning

confidence: 99%

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

Soto‐Rubio¹,

Valero‐Moreno²,

Palencia³

et al. 2020

PLoS ONE

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“…Almost all participants wrote about HF as an "illness", according to our analysis using Kleinman's classi cation [10]. These results contrast with those seen for other chronic diseases, for example, COPD [19], in which patients report sickness-centered narratives. Therefore, although some people with HF had engaged in harmful behaviors (i.e.…”

Section: Discussionmentioning

confidence: 78%

“…chronic obstructive pulmonary disease, COPD) and doctor-patient relationships [16,17]. Similarly, studies in other chronic conditions indicated illness plots dedicated to patients and caregivers to be a source of information on personal coping with the disease, and on how patients and their families rearrange their lives after diagnosis [18][19][20].…”

Section: Introductionmentioning

confidence: 99%

The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through Narrative Medicine.

Testa

Cappuccio²,

Latella

et al. 2020

Preprint

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Background: The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the perspectives of people with heart failure (HF), their informal caregivers and HF specialists of the impact of heart failure (HF) on the daily life of patients and their carers. Methods: Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. Results: 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients’ and their caregivers’ daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. Conclusions: This NM project illustrates the complex issues of living with HF and gave insights to integrate three different perspectives into the HF pathway of care.

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“…Almost all project participants wrote about the patient's HF as an 'illness', according to our analysis using Kleinman's theory [10]. These results are in contrast with those seen with other chronic diseases, for example, COPD [19], in which patients report 'sickness narratives'. Therefore, although some people with HF had engaged in harmful behaviors (i.e., smoking, alcohol consumption, over-eating) that may have contributed to HF development, they did not feel judged for the onset of HF.…”

Section: Participation In Nmmentioning

confidence: 93%

“…Recent studies have demonstrated advantages of applying the parallel chart in exploring a healthcare professional's point of view about the pathway of care for chronic conditions (i.e., chronic obstructive pulmonary disease [COPD]) and doctor-patient relationships [16,17]. Similarly, patient and caregiver illness plots were recently shown to be a source of information on personal coping with the disease, and on how patients and their families rearrange their lives after a diagnosis in studies in other chronic diseases [18][19][20].…”

Section: Introductionmentioning

confidence: 99%

The Burden of Heart Failure: Physicians’, Patients’, and Caregivers’ Perspectives Using Narrative Medicine

Testa

Cappuccio²,

Latella

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

Background The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the impressions of people with heart failure (HF), their informal caregivers and HF specialists of the impact of heart failure (HF) on the daily life of patients and their carers. Methods Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. Results 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients’ and their caregivers’ daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. Conclusions This NM project illustrates the complex issues of living with HF and gave new insight into integrating three different perspectives into the HF pathway of care.

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Enlightening chronic obstructive pulmonary disease through patients’ and caregivers’ narratives

Cited by 18 publications

References 42 publications

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through Narrative Medicine.

The Burden of Heart Failure: Physicians’, Patients’, and Caregivers’ Perspectives Using Narrative Medicine

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