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When is the Dyspnea Worth It? Understanding Functional Performance in People with Alpha‐1 Antitrypsin Deficiency
Author(s) -
Knebel Ann,
Leidy Nancy Kline,
Sherman Sandra
Publication year - 1998
Publication title -
image: the journal of nursing scholarship
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.009
H-Index - 80
eISSN - 1547-5069
pISSN - 0743-5150
DOI - 10.1111/j.1547-5069.1998.tb01330.x
Subject(s) - alpha 1 antitrypsin deficiency , context (archaeology) , medicine , psychological intervention , social connectedness , population , quality of life (healthcare) , gerontology , psychology , psychiatry , environmental health , nursing , paleontology , psychotherapist , biology
Objective and Significance: To examine functional performance in people with emphysema because of alpha‐1 antitrypsin (AAT) deficiency. A severe deficiency of AAT affects 1:3,500 to 1:1,670 Americans who can develop debilitating emphysema in the third to fifth decades of life. Design: Exploratory. Population: People with a severe deficiency of AAT. Sample and Demographics: Thirty‐three patients (27 men) with a mean age of 47 (SD=7) years. Years: Data were collected 7993–7996. Methods: Activities patients identified as important on the dyspnea subscale of the Chronic Respiratory Disease Questionnaire were categorized and interpreted within the context of an integrity framework (i.e., effectiveness—or connectedness‐related). Findings: Patients identified over 25 activities. Effectiveness activities, such as bathing, were mentioned most frequently (78%). Connectedness activities, such as praying with children, were mentioned less often (22%) but were ranked more important. Two patients reviewed and supported the content validity of the framework. Conclusions: Results offer insight into the activities patients with genetic emphysema choose to perform and the factors that influence the decision that “the dyspnea is worth it.” Implications: Identifying the activities people with AAT deficiency choose to perform and understanding why these activities are meaningful can guide interventions to help patients maintain a sense of integrity.