title: [Inflammatory bowel diseases: experiencing illness, therapy and care].
abstract: People affected by Crohn's disease or ulcerative colitis experience a high level of suffering. A new generation of anti-tumour necrosis factor-α agents can alleviate the burden of symptoms considerably. In order to develop a need-centred care programme for this patient group, we conducted problem-centred interviews with nine patients about their experience of the disease, the therapy and the quality of nursing care. The evaluation was based on qualitative content analysis. Patients' statements revealed three general categories: (1) "the never ending story" of a life with IBD, (2) "the sudden change" due to successful therapy and (3) "the narrow path" of a new stage of life: the disease no longer dominated daily life. The results emphasise the necessity of specific care for this patient group in order to perceptibly enhance their self-management and quality of life. The study illuminates a developing field of ambulant nursing care, based on the knowledge of patients' needs in the context of a chronic disease characterised by an unpredictable and irregular course.
authors.affiliation: Zentrum Klinische Pflegewissenschaft, UniversitätsSpital Zürich. horst.rettke@usz.ch
authors.forename: Horst
authors.initials: H
authors.lastname: Rettke
authors.forename: Diana
authors.initials: D
authors.lastname: Staudacher
authors.forename: Silvia
authors.initials: S
authors.lastname: Schmid-Büchi
authors.forename: Inis
authors.initials: I
authors.lastname: Habermann
authors.forename: Rebecca
authors.initials: R
authors.lastname: Spirig
authors.forename: Gerhard
authors.initials: G
authors.lastname: Rogler
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D003093:Colitis, Ulcerative / Q000451:nursing* / Q000523:psychology*; D003424:Crohn Disease / Q000451:nursing* / Q000523:psychology*; D005260:Female; D006801:Humans; D007406:Interview, Psychological; D008019:Life Style; D008297:Male; D008875:Middle Aged; D010817:Physician-Patient Relations; D011788:Quality of Life / Q000523:psychology; D012648:Self Care / Q000523:psychology; D012803:Sick Role; D014409:Tumor Necrosis Factor-alpha / Q000037:antagonists & inhibitors
chemical_list: D014409:Tumor Necrosis Factor-alpha