EMPIRICAL STUDIES Being a close relative of a person with severe, chronic heart failure in palliative advanced home care – a comfort but also a strain Margareta Bra ¨ nnstro ¨m RNT, MSc (PhD Student) 1,2,3 , Inger Ekman RN, PhD (Associate Professor) 4 , Kurt Boman MD, PhD (Professor) 2,3 and Gunilla Strandberg RNT, PhD (Assistant Professor) 1 1 Department of Nursing, Umea ˚ University, Umea ˚ , Sweden, 2 Department of Medicine-Geriatric, Skelleftea ˚ County Hospital, Sweden, 3 Department of Public Health and Clinical Medicine, Umea ˚ University, Umea ˚, Sweden and 4 Institute of Nursing, Sahlgrenska Academy at Go ¨ teborg University, Go ¨ teborg, Sweden Scand J Caring Sci; 2007; 21; 338–344 Being a close relative of a person with severe, chronic heart failure in palliative advanced home care – a comfort but also a strain Within previous research on family care of terminally ill people, studies have only rarely been carried out con- cerning heart failure care. This study aims to illuminate meanings of being a close relative of a person with severe, chronic heart failure (CHF) in palliative advanced home care (PAHC). Narrative interviews were conducted with three close relatives, tape-recorded, transcribed verbatim and a phenomenological-hermeneutic method was used to interpret the text. Meanings of being a close relative is to follow the life-threatening ups and downs, the person with CHF is going through. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team, trusting their ability to show up on time to alleviate in the worst downs i.e. ease suffering. This study reveals that to be the close relative that the ill person is dependent on 24 hours a day is both a comfort and a strain. Keywords: close relative, heart failure, home care, palliative care, phenomenological-hermeneutic. Submitted 8 June 2006, Accepted 13 October 2006 Introduction This study is part of an ongoing project which aims to illuminate meanings of living with severe, chronic heart failure (CHF) in palliative advanced home care (PAHC) from the perspective of nurses (1), patients (2) and their close relatives. The whole family is usually affected when a person contracts a serious, chronic illness. Narratives of close relatives living with such a person disclose a reduced sense of personal freedom and an increased sense of responsibility for the care of that person. The close rela- tives’ lives contract as they do not have enough energy to be involved with the outside world (3). Studies have shown that the role of close relatives often changes during the progress of the disease (4); the role is commonly that of both caregiver and receiver of help (5) and this shifting between different roles may be distressing and burden- some (6). Being a close relative of a person with a life- threatening disease usually means living a complicated life, and facing a number of new emotional and practical issues (7). Within the previous research on family caregiving of terminally ill persons, studies have mainly been carried out concerning cancer care (8, 9). Family caregiving for people with severe CHF is rarely studied although these people have a serious condition as more than 50% die within 1 year (10). Studies in the USA (11) and in Sweden (12) show that a large proportion of people with severe CHF suffer from uncontrolled symp- toms, such as severe pain and dyspnoea, at the end of their life. Meanings of living with severe CHF in PAHC emerged as ‘knocking on death’s door’ yet surviving and never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable interwoven symptoms (2). Patients with CHF and their spouses experience different levels of depression and physical quality of life (13). A study reveals that it is both burdensome and stressful for the spouse caregivers of people with heart failure (14). Weller Moore (15) describes wives’ experiences of caring for their husbands with CHF as surviving chaos. Control Correspondence to: Margareta Bra ¨ nnstro ¨ m, Department of Nursing, Umea ˚ University, 90187 Umea ˚ , Sweden. E-mail: margareta.brannstrom@nurs.umu.se 338 Ó 2007 Nordic College of Caring Science, Scand J Caring Sci; 2007; 21, 338–344