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Struggling to retain living space: patients’ stories about living with advanced chronic obstructive pulmonary disease

Authors

  • Kristina Ek,

    1. Kristina Ek MSc RN Doctoral Student School of Health and Medical Sciences, Örebro University, Sweden
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  • Eva Sahlberg-Blom,

    1. Eva Sahlberg-Blom PhD RNT Lecturer School of Health and Medical Sciences, Örebro University, Sweden, and Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden
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  • Birgitta Andershed,

    1. Birgitta Andershed RNT Associate Professor School of Health and Medical Sciences, Örebro University, Sweden, and Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden
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  • Britt-Marie Ternestedt

    1. Britt-Marie Ternestedt RNT Professor Department of Palliative Care Research, Ersta Sköndal University College, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden, and Stockholms Sjukhem Foundation, Research and Development Department, Stockholm, Sweden
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K. Ek: e-mail: kristina.ek@oru.se

Abstract

ek k., sahlberg-blom e., andershed b. & ternestedt b.-m. (2011) Struggling to retain living space: patients’ stories about living with advanced chronic obstructive pulmonary disease. Journal of Advanced Nursing67(7), 1480–1490.

Abstract

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.

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