The silence of patients with end-stage COPD: a qualitative study

Habraken, Jolanda M.; Pols, Jeannette; Bindels, Patrick J E; Willems, Dick L.

doi:10.3399/bjgp08x376186

Cited by 87 publications

(95 citation statements)

References 21 publications

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“…54 The impact of information governance policy and procedures on the use of technology in case management is yet to be determined as the NHS strives to contain breaches in patient information and the loss of computerised data. If many of these technology-based studies are to be translated into clinical care then clearly the transmission of identifiable patient information through telecommunication networks may need further wide-ranging discussion.…”

Section: Discussionmentioning

confidence: 99%

Technology and its role in respiratory care

Smith

Elkin

Partridge

2009

Primary Care Respiratory Journal

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Introduction: Telemonitoring, telemedicine, clinical and medical informatics or telecare, are terms used to describe the use of technology along with local clinical protocols to monitor remotely a patient's medical condition in their own home. In respiratory medicine, where large numbers of people have long term conditions such as asthma and chronic obstructive pulmonary disease (COPD), the role of such monitoring technology in the management of patients is of great interest.

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Section: Discussionmentioning

confidence: 99%

Technology and its role in respiratory care

Smith

Elkin

Partridge

2009

Primary Care Respiratory Journal

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“…Respecto a las consecuencias, al igual que en nuestra investigación, se ha encontrado la infraestimación de la severidad de la enfermedad en otros estudios (Habraken, Pols, Bindels y Willems, 2008;Pitta et al, 2005;Rennard et al, 2008). El hecho de que los pacientes normalicen sus sínto-mas y solo se consideren enfermos en las reagudizaciones, puede considerarse "positivo": el efecto de prestar poca atención a los síntomas se relaciona con mejor calidad de vida autopercibida (Scharloo et al, 2007).…”

Section: Discussionunclassified

“…También son llamativos los miedos que no aparecen: el temor a padecer cáncer de pulmón, que en otros estudios con pacientes en riesgo de o con EPOC en atención primaria, aparece como un temor relevante (Habraken et al ., 2008).…”

Section: Discussionunclassified

Cómo vivir con EPOC: percepción de los pacientes.

Muñoz-Cobos

Guasch²,

Cuenca-del-Moral

et al. 2015

AN PSICOL-SPAIN

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The aim of this study is to determine the mental model that patients with COPD (chronic obstructive pulmonary disease<strong>)</strong>have about their illness analyzed by the Leventhal´s Common Sense of Self-Regulation Model. An exploratory-descriptive study using qualitative methodology was performed. We included COPD-diagnosed patients attending three urban and a rural primary care centres. We used video-taped group interviews and transcribed them using Atlas.Ti 5.2 program. 22 group interviews (2009 - 2011) and 58 patients were included. There were 3 additional sessions to final inform validation. The results show that patients did not have a defined mental model about COPD: this disease was insufficiently recognized; diagnosis was made in exacerbations and it was confused with other diseases; the cause of illness was related to tobacco consumption and to “something else”: fumes, colds and hard work. Patients tended to minimize their symptoms and limitations. Participants had wrong beliefs about colds, smoking only a few cigarettes effects and damage of inhaled treatment. Emotions as despair, resignation and fear were reported. We conclude that COPD patients showed confusion about many aspects of the disease (causes, symptoms, treatments). It was difficult to identify a mental model of the disease among COPD patients. <p> </p>

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“…However, there are indications that the disease symptoms often fluctuate in patients with non-cancer illnesses, such as end-stage chronic obstructive pulmonary disease (COPD) or heart failure, and the course of the disease is therefore difficult to predict. [3][4][5] It can be expected that the shift towards palliative care in these patients may only take place shortly before death and that identifying a time point for transition to palliative care is more difficult for people with COPD, for instance. 6 The course of the disease in patients with incurable cancer maybe relatively predictable, with a clearer demarcation between the curative and palliative stages.…”

Section: Introductionmentioning

confidence: 99%