title: Living in limbo--patients with cystic fibrosis waiting for transplant.
abstract: Lung transplant for patients with end-stage cystic fibrosis (CF) in the UK is recognized as the only successful treatment for CF patients with advanced lung disease. This study uses an exploratory approach to examine how patients with CF and their carers cope with the rigours of chronic illness and life on a transplant waiting list. Eight patients with CF, four awaiting transplant and four who had been transplanted within the previous 3 years, along with five of their carers, were asked to recount their experiences using a semi-structured interview technique. Four themes emerged from the interview data; displacement, disorder, life in limbo and readjustment to wellness. Support appears to be particularly important to patients and families after false alarms occur, and upon return home after transplant. The small sample size precludes generalization of the results to all patients with CF but gives an in-depth insight into the lived experience of waiting for transplant.
authors.affiliation: Department of Health Sciences, Queen Margaret University College, Edinburgh.
authors.forename: Kath
authors.initials: K
authors.lastname: Macdonald
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D015992:Body Mass Index; D017028:Caregivers / Q000523:psychology; D003550:Cystic Fibrosis / Q000523:psychology* / Q000601:surgery; D003717:Denial, Psychological; D005190:Family / Q000523:psychology; D005260:Female; D005541:Forced Expiratory Volume; D006301:Health Services Needs and Demand; D006801:Humans; D016040:Lung Transplantation / Q000523:psychology; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D015404:Nursing Methodology Research; D036301:Qualitative Research; D011788:Quality of Life; D018401:Sample Size; D012944:Social Support; D011795:Surveys and Questionnaires; D013997:Time Factors; D014850:Waiting Lists