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Being a close relative of a person with severe, chronic heart failure in palliative advanced home care - a comfort but also a strain.
Umeå University, Faculty of Medicine, Nursing.ORCID iD: 0000-0003-1688-8991
Umeå University, Faculty of Medicine, Public Health and Clinical Medicine, Medicine. Medicin.
Umeå University, Faculty of Medicine, Nursing.
2007 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, Vol. 21, no 3, 338-344 p.Article in journal (Refereed) Published
Abstract [en]

Within previous research on family care of terminally ill people, studies have only rarely been carried out concerning 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.

Place, publisher, year, edition, pages
2007. Vol. 21, no 3, 338-344 p.
Keyword [en]
Adaptation, Psychological, Aged, Caregivers/*psychology, Female, Heart Failure/*therapy, Home Care Services, Humans, Male, Middle Aged, Palliative Care, Professional-Family Relations, Sweden
Identifiers
URN: urn:nbn:se:umu:diva-6805DOI: doi:10.1111/j.1471-6712.2007.00485.xPubMedID: 17727546OAI: oai:DiVA.org:umu-6805DiVA: diva2:146475
Available from: 2008-01-04 Created: 2008-01-04 Last updated: 2015-07-03Bibliographically approved
In thesis
1. Ett liv i berg och dalbana: innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
Open this publication in new window or tab >>Ett liv i berg och dalbana: innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
2007 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. 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 (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness 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 partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.

Place, publisher, year, edition, pages
Umeå: Omvårdnad, 2007. 43 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1084
Keyword
chronic heart failure, close relative, limit situation, palliative care, patient, phenomenological-hermeneutics, professional caregiver, fenomenologisk-hermeneutik, gränssituation, professionella vårdare, kronisk hjärtsvikt, närstående, palliativ vård, patient
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-1026 (URN)978-91-7264-256-0 (ISBN)
Public defence
2007-03-15, Aulan, Vårdvetarhuset, Umeå universitet, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2007-02-22 Created: 2007-02-22 Last updated: 2009-05-14Bibliographically approved

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Brännström, MargaretaBoman, KurtStrandberg, Gunilla

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