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Att leva med mycket svår kronisk obstruktiv lungsjukdom: ett liv i slowmotion
Örebro University, School of Health and Medical Sciences.
2010 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to describe how people with very severe obstructive pulmonary disease (COPD) experienced their every day lives and created meaning, with focus on end-of-life. A second aim was to describe how death and dying can be viewed from the perspective of relatives to people with COPD. In study I, eight patients were interviewed about how COPD affected their everyday lives. A phenomenological method was used. In study II, four people with COPD who lived alone were interviewed over time, to illuminate how the illness influenced their everyday life and their existential thoughts about life and death. In study III, four couples of whom one partner in each couple had COPD were interviewed several times to illuminate the affect the illness had on the spousal relationship, their self-expressed needs, and their existential thoughts, from the perspective of two people living together. A phenomenological-hermeneutic method was used for the analyses in studies IIand III. Study IV aimed at studying patients’ last six months of life with focuson dying and death, and in this study content analysis was used.The studies (I-IV) revealed that suffering from very severe COPD can be a daily struggle to survive as well as to maintain the self-image. The studies also explicate experiences of a shrinking life space, and questions of meaning were being challenged (I). Study II showed that living alone provided feelings of independency. However the bodily losses reminded the patients’ about death and raised fears about death of being painful, as they did not want to face death alone. For the couples in study III living with COPD meant living in a changed pace with uncertainty, changed intimate relationship and finding new ways of living together. Study IV outlined the trajectory of illness to be irregular and characterized by periods of sudden deterioration, making it difficult to plan for the future. Death was experienced as an unexpected experience and was described by all as peaceful. The results in this thesis have outlined important insight into the existential challenges of living with COPD as experienced by the ill persons themselves and their next of relatives.

Place, publisher, year, edition, pages
Örebro: Örebro universitet , 2010. , 93 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 31
Keyword [en]
advanced chronic obstructive pulmonary disease, palliative care, living alone, couple, relatives, trajectory, nursing, death, dying
National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-12166ISBN: 978-91-7668-755-0 (print)OAI: oai:DiVA.org:oru-12166DiVA: diva2:356056
Public defence
2010-12-10, Örebro universitet, Prismahuset, Hörsal P2, Fakultetsgatan 1, Örebro, 13:00 (Swedish)
Opponent
Supervisors
Note
Birgitta Andershed is also affiliated to Enheten för forskning i palliativ vård, Ersta Sköndal Högskola, Stockholm och Institutionen för omvårdnad, Gjøvik universitet, Norge. Eva Sahlberg-Blom is also affiliated to Enheten för forskning i palliativ vård, Ersta Sköndal Högskola, StockholmAvailable from: 2010-10-11 Created: 2010-10-11 Last updated: 2011-04-21Bibliographically approved
List of papers
1. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study
Open this publication in new window or tab >>Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study
2008 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 62, no 4, 470-478 p.Article in journal (Refereed) Published
Abstract [en]

Title. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study Aim. This paper is a report of a study to describe the essential structure of the lived experience of living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease. Background. Chronic obstructive pulmonary disease is one of the most common diseases throughout the world. Shortness of breath, fatigue and cough are the most troublesome symptoms, and living with COPD often imposes limitations on daily living. The disease has a great impact on quality of life and affects the extent to which people can be active in daily life. Methods. We conducted qualitative interviews of eight people with COPD and collected data over a 2-month period in 2003. Our patients were recruited from two pulmonary disease clinics in West Sweden. We used a phenomenological methodology to analyse the interviews. Findings. Daily life for people with COPD is affected in several different ways. The patients described how their physical limitations forced them to refrain from meaningful activities in everyday life and led to social isolation. Everyday emotions vacillated between viewing life as meaningful and meaningless. A sense of involvement and the belief that life was meaningful gave the individual the energy and the desire to continue living and to envision a future. Conclusion. Nursing care should include support and facilitation, so that patients can live rather than exist to the end of their lives. It is important to learn from patients and tailor activities to their social, existential and physical priorities, where appropriate family-centred support may be most effective. © 2008 Blackwell Publishing Ltd.

Keyword
Chronic illness, Chronic obstructive pulmonary disease, End of life, Interviews, Nursing, Palliative care, Phenomenology
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-14359 (URN)10.1111/j.1365-2648.2008.04611.x (DOI)000255714600007 ()
Available from: 2011-01-28 Created: 2011-01-28 Last updated: 2012-08-06Bibliographically approved
2. Struggling to retain living space: patients' stories about living with advanced chronic obstructive pulmonary disease
Open this publication in new window or tab >>Struggling to retain living space: patients' stories about living with advanced chronic obstructive pulmonary disease
2011 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 67, no 7, 1480-1490 p.Article in journal (Refereed) Published
Abstract [en]

Aim: This paper is a report of a study of the experience of living with advanced chronic obstructive pulmonary disease and long-term oxygen therapy when living alone.

Background: Chronic obstructive pulmonary disease affects an increasing number of people. Breathlessness, fatigue and dejection are common symptoms during the last years of life.

Method: Repeated qualitative interviews with four participants were conducted over an 8-month period in 2008. The data comprised 17 interviews, 15 telephone conversations and various field notes. A phenomenological hermeneutical method was used to interpret the text.

Findings: The analysis resulted in two main themes and five sub-themes. The first main theme, Being subordinated to the sick body, implies that the body, assistive devices and entrusting oneself to the hands of others can both extend and restrict the living space. The second main theme, Protecting significant values of identity, encompasses both the struggle to maintain self-image and the awareness of one's own death.

Conclusion: Living alone with advanced chronic obstructive pulmonary disease is a challenging and complex phenomenon. The everyday life was characterized by a struggle to keep autonomy during a time of increasing dependency and need for help. A person-centred nursing care, built upon peoples' own experiences, may be one way to promote identity and dignity in patients even when they are close to death.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2011
Keyword
chronic obstructive pulmonary disease, living alone, nursing, oxygen therapy, phenomenological-hermeneutic
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-15355 (URN)10.1111/j.1365-2648.2010.05604.x (DOI)000292779400007 ()21375574 (PubMedID)2-s2.0-79958755798 (Scopus ID)
Available from: 2011-04-21 Created: 2011-04-21 Last updated: 2017-02-09Bibliographically approved
3. Shifting life rhythms: couples' stories about living together when one partner has advanced chronic obstructive pulmonary disease
Open this publication in new window or tab >>Shifting life rhythms: couples' stories about living together when one partner has advanced chronic obstructive pulmonary disease
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-15356 (URN)
Available from: 2011-04-21 Created: 2011-04-21 Last updated: 2016-12-12Bibliographically approved
4. Living in uncertainty: illness and dying trajectory in advanced COPD
Open this publication in new window or tab >>Living in uncertainty: illness and dying trajectory in advanced COPD
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-15357 (URN)
Available from: 2011-04-21 Created: 2011-04-21 Last updated: 2016-12-12Bibliographically approved

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