title: Waiting for a liver transplant: the experience of patients with familial amyloidotic polyneuropathy.
abstract: Liver transplant is a new treatment for familial amyloidotic polyneuropathy. The purpose of this phenomenological study is to describe the experience of waiting for a liver transplant from the familial amyloidotic polyneuropathy patients' perspective. Unstructured and open-ended interviews were conducted with 14 familial amyloidotic polyneuropathy patients and the analysis of data was inspired by Colaizzi's method. Waiting was found to involve two theme categories: waiting for a decision; and waiting for the operation. Seven themes were identified: bargaining with oneself; no influence/powerlessness; relief and joy; impatience; agony; time to prepare; and need for information and support. Implications for nursing practice, such as informational and emotional support, are discussed.
authors.affiliation: Department of Medicine, Umeå University Hospital, Sweden. elisabeth.jonsen@nurs.umu.se
authors.forename: E
authors.initials: E
authors.lastname: Jonsén
authors.forename: E
authors.initials: E
authors.lastname: Athlin
authors.forename: O B
authors.initials: OB
authors.lastname: Suhr
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017772:Amyloid Neuropathies / Q000150:complications*; D001294:Attitude to Health; D005260:Female; D006801:Humans; D017093:Liver Failure / Q000209:etiology / Q000523:psychology* / Q000628:therapy; D016031:Liver Transplantation / Q000451:nursing / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D010353:Patient Education as Topic; D011209:Power, Psychological; D012944:Social Support; D011795:Surveys and Questionnaires; D014850:Waiting Lists