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Ett liv i berg och dalbana: innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
Umeå University, Faculty of Medicine, Omvårdnad.
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 [en]
chronic heart failure, close relative, limit situation, palliative care, patient, phenomenological-hermeneutics, professional caregiver
Keyword [sv]
fenomenologisk-hermeneutik, gränssituation, professionella vårdare, kronisk hjärtsvikt, närstående, palliativ vård, patient
National Category
Nursing
Identifiers
URN: urn:nbn:se:umu:diva-1026ISBN: 978-91-7264-256-0 (print)OAI: oai:DiVA.org:umu-1026DiVA: diva2:140000
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
List of papers
1. Living with severe chronic heart failure in palliative advanced home care.
Open this publication in new window or tab >>Living with severe chronic heart failure in palliative advanced home care.
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2006 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, Vol. 5, no 4, 295-302 p.Article in journal (Refereed) Published
Abstract [en]

Background - Living with severe chronic heart failure (CHF) in palliative care has been little studied.

Aim - The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives.

Methods-Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological–hermeneutic method was used to interpret the text.

Results - Meaning of living with severe CHF in palliative advanced home care emerged as ‘knocking on death's door’ although surviving. The course of the illness forces one to live a ‘roller coaster life,’ with an ongoing oscillation between ups and downs. Making it through the downs breeds a kind of confidence in one's ability to survive and the will to live is strong. Being offered a safety belt in the ‘roller coaster’ by the palliative advanced home care team evokes feelings of security.

Conclusions - Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one's imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home.

Keyword
Activities of Daily Living, Adaptation; Psychological, Aged, Aged; 80 and over, Attitude to Death, Attitude to Health, Chronic Disease, Fear/psychology, Female, Geriatric Assessment, Heart Failure/prevention & control/*psychology, Home Care Services/organization & administration, Humans, Male, Nursing Methodology Research, Palliative Care/organization & administration/*psychology, Questionnaires, Self Care/psychology, Self Efficacy, Severity of Illness Index, Social Isolation, Social Support, Sweden
Identifiers
urn:nbn:se:umu:diva-6699 (URN)doi:10.1016/j.ejcnurse.2006.01.006 (DOI)16546447 (PubMedID)
Available from: 2008-01-04 Created: 2008-01-04 Last updated: 2016-02-01Bibliographically approved
2. Being a close relative of a person with severe, chronic heart failure in palliative advanced home care - a comfort but also a strain.
Open this publication in new window or tab >>Being a close relative of a person with severe, chronic heart failure in palliative advanced home care - a comfort but also a strain.
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.

Keyword
Adaptation, Psychological, Aged, Caregivers/*psychology, Female, Heart Failure/*therapy, Home Care Services, Humans, Male, Middle Aged, Palliative Care, Professional-Family Relations, Sweden
Identifiers
urn:nbn:se:umu:diva-6805 (URN)doi:10.1111/j.1471-6712.2007.00485.x (DOI)17727546 (PubMedID)
Available from: 2008-01-04 Created: 2008-01-04 Last updated: 2015-07-03Bibliographically approved
3. Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period.
Open this publication in new window or tab >>Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period.
2007 (English)In: Contemporary Nurse, ISSN 1037-6178, Vol. 27, no 1, 10-22 p.Article in journal (Refereed) Published
Keyword
Fatigue, Heart Failure/*nursing/physiopathology, Home Care Services, Humans, Male, Palliative Care, Quality of Life
Identifiers
urn:nbn:se:umu:diva-10181 (URN)doi:10.5555/conu.2007.27.1.10 (DOI)18386950 (PubMedID)
Available from: 2008-06-30 Created: 2008-06-30 Last updated: 2015-07-03Bibliographically approved
4. Being a palliative nurse for persons with severe congestive heart failure in advanced homecare.
Open this publication in new window or tab >>Being a palliative nurse for persons with severe congestive heart failure in advanced homecare.
Show others...
2005 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, Vol. 4, no 4, 314-323 p.Article in journal (Refereed) Published
Abstract [en]

Advanced homecare for persons with congestive heart failure is a ‘new’ challenge for palliative nurses. The aim of this study is to illuminate the meaning of being a palliative nurse for persons with severe congestive heart failure in advanced homecare. Narrative interviews with 11 nurses were conducted, tape-recorded, and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. One meaning of being a palliative nurse is being firmly rooted and guided by the values of palliative culture. Being adaptable to the patient's way of life carries great weight. On one hand nurses live out this value, facilitating for the patients to live their everydaylife as good as possible. Being a facilitator is revealed as difficult, challenging, but overall positive. On the other hand nurses get into a tight corner when values of palliative culture clash and do not correspond with the nurses interpretation of what is good for the person with congestive heart failure. Being in such a tight corner is revealed as frustrating and giving rise to feelings of inadequacy. Thus, it seems important to reflect critical on the values of palliative culture.

Keyword
Adult, Attitude of Health Personnel, Community Health Nursing, Female, Heart Failure/*nursing, Humans, Male, Middle Aged, Nurse-Patient Relations, Nursing Methodology Research, Nursing Staff/*psychology, Palliative Care, Severity of Illness Index, Social Values
Identifiers
urn:nbn:se:umu:diva-6700 (URN)doi:10.1016/j.ejcnurse.2005.04.007 (DOI)15946901 (PubMedID)
Available from: 2008-01-04 Created: 2008-01-04 Last updated: 2016-02-01Bibliographically approved

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