title: Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period.
abstract: The aim of this paper is to illuminate meanings of living the 'ups and downs', through the narratives of one man with severe, chronic heart failure (CHF) and his wife in palliative advanced home care (PAHC). Narrative interviews were conducted over a 4.5-year period and a phenomenological-hermeneutic method was used to interpret the text. The analysis resulted in one theme and four sub-themes. Meanings of living the 'ups and downs' is symbolically understood as being captive in a roller-coaster ride, side by side. In togetherness one helps one another to integrate the illness into everyday life.When, the inevitable 'downs' come one alleviates them as much as possible and/or just endures them waiting to see if one outlives them. During the 'ups' one seizes every opportunity to live, doing the things one likes and discovering new possibilities in life. Sharing the safety belt on the 'roller coaster', offered by the PAHC team, evokes feelings of security.However, the safety belt is adjusted to the man with severe CHF leaving the wife without comfort and at times uncertain, especially in the deepest 'downs'. Our results indicate that the importance of medical treatment may increase over time. The ability to recognize symptoms and signs of deterioration may be facilitated by a trusted PAHC team's repeated questions about the condition. Furthermore it is important to offer support directly to the close relatives.
authors.affiliation: Department of Nursing, Umeå University, Umeå, Sweden.
authors.forename: Margareta
authors.initials: M
authors.lastname: Brännström
authors.forename: Inger
authors.initials: I
authors.lastname: Ekman
authors.forename: Kurt
authors.initials: K
authors.lastname: Boman
authors.forename: Gunilla
authors.initials: G
authors.lastname: Strandberg
mesh_terms: D005221:Fatigue; D006333:Heart Failure / Q000451:nursing* / Q000503:physiopathology; D006699:Home Care Services; D006801:Humans; D008297:Male; D010166:Palliative Care; D011788:Quality of Life