Rebecca T Disler1, Anna Green2, Tim Luckett2, Phillip J Newton3, Sally Inglis4, David C Currow5, Patricia M Davidson6. 1. University of Technology Sydney, Ultimo, New South Wales, Australia; Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia. Electronic address: rebecca.disler@uts.edu.au. 2. University of Technology Sydney, Ultimo, New South Wales, Australia; Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia; ImPaCCT (Improving Palliative Care through Clinical Trials), South Western Sydney Clinical School, Liverpool, New South Wales, Australia. 3. University of Technology Sydney, Ultimo, New South Wales, Australia; Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia. 4. University of Technology Sydney, Ultimo, New South Wales, Australia. 5. Discipline, Palliative, and Supportive Services, Flinders Centre for Clinical Change, Flinders University, Adelaide, South Australia, Australia. 6. ImPaCCT (Improving Palliative Care through Clinical Trials), South Western Sydney Clinical School, Liverpool, New South Wales, Australia; Department of Acute and Chronic Care, School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA.
Abstract
CONTEXT: Chronic obstructive pulmonary disease (COPD) is a life-limiting illness. Despite best available treatments, individuals continue to experience symptom burden and have high health care utilization. OBJECTIVES: To increase understanding of the experience and ongoing needs of individuals living with COPD. METHODS: Medline, PsycINFO, CINAHL, and Sociological Abstracts were searched for articles published between January 1990 and June 2013. Metasynthesis of qualitative data followed the principles of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Metasyntheses are increasingly used to gain understandings of complex research questions through synthesizing data from individual qualitative studies. Descriptive and analytical themes were developed through thematic synthesis and expert panel discussion of extracted primary quotes, not the primary data themselves. RESULTS: Twenty-two studies were included. Four hundred twenty-two free codes were condensed into seven descriptive themes: better understanding of condition, breathlessness, fatigue, frailty, anxiety, social isolation, and loss of hope and maintaining meaning. These seven themes were condensed further into three analytical themes that described the experience and ongoing needs of individuals with COPD: the need for better understanding of condition, sustained symptom burden, and the unrelenting psychological impact of living with COPD. CONCLUSION: Combining discrete qualitative studies provided a useful perspective of the experience of living with COPD over the past two decades. Further studies into the ongoing needs of individuals with COPD are unlikely to add to this well-established picture. Future research should focus on solutions through the development of interventions that address patients' ongoing needs.
CONTEXT: Chronic obstructive pulmonary disease (COPD) is a life-limiting illness. Despite best available treatments, individuals continue to experience symptom burden and have high health care utilization. OBJECTIVES: To increase understanding of the experience and ongoing needs of individuals living with COPD. METHODS: Medline, PsycINFO, CINAHL, and Sociological Abstracts were searched for articles published between January 1990 and June 2013. Metasynthesis of qualitative data followed the principles of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Metasyntheses are increasingly used to gain understandings of complex research questions through synthesizing data from individual qualitative studies. Descriptive and analytical themes were developed through thematic synthesis and expert panel discussion of extracted primary quotes, not the primary data themselves. RESULTS: Twenty-two studies were included. Four hundred twenty-two free codes were condensed into seven descriptive themes: better understanding of condition, breathlessness, fatigue, frailty, anxiety, social isolation, and loss of hope and maintaining meaning. These seven themes were condensed further into three analytical themes that described the experience and ongoing needs of individuals with COPD: the need for better understanding of condition, sustained symptom burden, and the unrelenting psychological impact of living with COPD. CONCLUSION: Combining discrete qualitative studies provided a useful perspective of the experience of living with COPD over the past two decades. Further studies into the ongoing needs of individuals with COPD are unlikely to add to this well-established picture. Future research should focus on solutions through the development of interventions that address patients' ongoing needs.
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