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Question How do patients with chronic obstructive pulmonary disease (COPD) experience the changes in their ability to perform day to day activities?
Pulmonary outpatient clinic in southeastern USA.
12 English speaking patients (mean age 67 y, 50% men) with moderate to severe emphysema, chronic bronchitis, asthma with underlying chronic airways obstruction, or COPD. Patients of varying sociodemographic backgrounds were recruited using purposive sampling.
Unstructured, tape recorded interviews that lasted 30–60 minutes each were conducted in a private room in the clinic. Patients were asked to describe a typical day and were then encouraged to self direct the content of the interview. Audiotapes were transcribed, checked for accuracy, and analysed based on Colaizzi's phenomenological method and the consensus dialogue approach to concept clarification. Theme clusters were identified and findings were validated for credibility.
The concept of personal integrity emerged, which related to patients' experiences of finding purpose and meaning from daily activity. Personal integrity represented a sense of satisfying wholeness that included intrapersonal and interpersonal characteristics. Patients felt the challenge of preserving personal integrity as they faced increasing limitations in their ability to perform activities. The 2 central characteristics that defined a sense of personal integrity were effectiveness and connectedness. Effectiveness was described as a sense of “being able,” and included 4 interrelated characteristics: physical predictability (an expectation that the body would function consistently), energy (an ability to function with ease), variety in form of expression (the perception that activities could be done in various ways), and expertise (the use of experience and knowledge). In response to these challenges, patients used emotional expression (talking about their frustrations), goal setting and “trying” (prioritising, planning, and pacing themselves), and recollection (remembering what they “used to do”). Connectedness was described as a sense of “being with” other people, a spiritual being, nature, or aspects of one's inner self. Connectedness related to the patients' desires for the following: familiarity and comfort, which seemed affected by their illness symptoms and treatments; shared experiences with family and friends; and the understanding and trustworthiness of others. In response to these challenges, patients enjoyed personal solitude and expressed gratitude for those people, ideas, or things that made them feel connected.
Patients with chronic obstructive pulmonary disease experienced ongoing challenges in preserving a sense of wholeness as they faced physical changes that interfered with their daily activities. Patients wanted to maintain personal integrity, which was described as having a sense of effectiveness and connectedness through their daily activities.
This study by Leidy and Haase adds strength and depth to quantitative research on the wide range of physiological, symptomatic, and psychosocial factors that influence performance in people with COPD. Their qualitative study explores the changes in ability to perform day to day activities from the perspective of the patients themselves. From this study, we learn that physical changes make daily activities more difficult and challenge personal integrity and feelings of effectiveness and connectedness with the world. The authors provide a detailed and comprehensive conceptual analysis of the data. The power of the patient's perspective is clear in the results presented.
The goal of the healthcare provider is to improve and maintain day to day performance in patients with COPD and yet, we are often at a loss for how to intervene. Although qualitative studies such as this are not designed to evaluate the effectiveness of interventions, they can provide direction about the types of interventions that should be designed and evaluated. This work on personal integrity suggests that interventions should focus on individual, patient driven needs; support emotional expression, goal setting, and recollection; and foster connectedness with family and friends. Regular access to nursing support based upon patient driven needs may increase a patient's belief in his ability to cope and develop a more empowering and less conditional relationship. Further research is needed to define the intervention more specifically and to evaluate its effectiveness in improving personal integrity and, ultimately, the patient's quality of life.
Source of funding: National Institutes of Health.
For correspondence: N K Leidy, Center for Health Outcomes Research, MEDTAP International Inc, 7101 Wisconsin Avenue, Suite 600, Bethesda, MD 20814, USA. Fax +1 301 654 9864.
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