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Att leva nära döden: patienters och vårdpersonals erfarenheter inom hospicevård
Örebro University, School of Health and Medical Sciences. (Vårdvetenskap, omvårdnad)
2009 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This research focused on experiences of dying patients and hospice nurses in a hospice unit. The research objectives were to (i) acquire more extensive knowledge about how dying patients and hospice nurses experience life and death and (ii) describe patients who were cared for during a 10-year period in an inpatient hospice ward. Data were gathered via interviews with 19 nurses and 11 patients. An interpretive description method was used to analyze interview results. Data were also gathered from institutional care records that included gender, age, marital status, diagnosis, referral source, and length of stay (666 women and 555 men). Descriptive statistics were used to describe basic features of the study's data and to compare differences between women and men. The main finding from interviewing the nurses was that they were struggling to acknowledge and unveil the person within the weakening body. In doing so, they used various strategies such as (i) striving to understand patients’ experiences of body function loss; (ii) encouraging patients to uphold body functions and daily habits; (iii) acknowledging and balancing patients’ need for body control; and (iv) providing tender care for the body. After 2 years of work in hospice care, nurses described that facing the dying and death of many patients had an impact on daily work and private life. The close relationship with the dying patient led to existential issues concerning the meaning of life and death, which were conceptualized into this theme: death as an agent of change. Eleven years later, the presence of death took a less dominant place in the nurses’ lives, and the theme became: death as a companion in life. In the long-term, nurses emphasized that their relationships with dying patients fostered their professional and personal growth. The findings from interviewing the patients revealed that when death became a reality, life took on new meaning, and they acquired new values that were important to preserve or protect; this triggered need for feeling secure within this situation. These revelations were manifest in three sub-themes: (i) when possible death becomes a reality; (ii) living with death as a reality, and (iii) a need for a feeling of security. And this main theme was conceptualized: making sense of life close to death. Results regarding patients in hospice ward care over a 10-year period revealed significant differences between women and men. More women than men were single, had cancer with relatively short trajectories, and were referred from the oncology department. More men than women were diagnosed with types of cancer with somewhat longer trajectories. Despite longer trajectories, length of stay was shorter for men than for women. The most frequent referral source was the hospital. But compared to women, men (particularly younger men) were more often referred from home-based hospice care. The findings expand knowledge about dying and its various configurations; consequently, care and support needs will vary. For the dying person, it is important to know that care is provided according to the person’s preferences and given when needed.

Place, publisher, year, edition, pages
Örebro: Örebro universitet , 2009. , 97 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 23
Keyword [en]
death; dying; hospice care; hospice nurse; palliative care; patients; patient characteristics
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-5439ISBN: 978-91-7668-650-8 (print)OAI: oai:DiVA.org:oru-5439DiVA: diva2:159886
Public defence
2009-03-06, Hörsal P2, Örebro universitet, Örebro, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2009-03-30 Created: 2009-02-09 Last updated: 2014-09-24Bibliographically approved
List of papers
1. Patient characteristics of women and men cared for during the first 10 years at an inpatient hospice ward in Sweden
Open this publication in new window or tab >>Patient characteristics of women and men cared for during the first 10 years at an inpatient hospice ward in Sweden
2006 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 20, no 2, 113-121 p.Article in journal (Refereed) Published
Abstract [en]

The hospice philosophy with focus on the patient's autonomy and the ideal of a good death are the overall objectives of palliative care. Often-raised questions, when discussing hospice, are for which of the incurable ill inpatient hospice is the most optimal care alternative together with who are making use of hospice. The aim of the present study was to describe patient characteristics such as age, marital status, diagnosis, referral source and length of stay (LoS) in relation to gender, during the first decade at an inpatient hospice ward (1992–2001). Data, obtained from medical register, were analysed by using descriptive statistics and the chi-square test. The number of patients was 666 women and 555 men, and most of them were elderly. In some respects significant differences were observed between women and men. More women than men were single, had cancer with relatively rapid trajectory and were referred from the oncology department. Men, more often than women, were diagnosed with cancers with a somewhat longer trajectory. Despite the longer trajectory, the LoS was shorter for men (median =13 days) than for women (median = 17 days). The most frequent referral source was hospital, though men, younger men in particular, were more often referred from home-based hospice care than women. During the last 3 years self-referrals were documented. Self-referrals can be seen as one distinct expression from a standpoint of one's own active choice compared with other referrals. Altogether, self-referrals were less frequent among women than men but in relation to age, self-referrals were more common among the youngest (<60 years) and the oldest women (>85 years) than men in the same age groups. Further studies illuminating a gender perspective can broaden the understanding of what these differences may imply for women and men.

Keyword
hospice, palliative care, patient characteristic, gender
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-5429 (URN)10.1111/j.1471-6712.2006.00387.x (DOI)000237784100002 ()16756516 (PubMedID)2-s2.0-33745338592 (Scopus ID)
Available from: 2009-02-09 Created: 2009-02-09 Last updated: 2014-09-24Bibliographically approved
2. Nurses’ perspectives on caring for hospice patients with weakening bodies
Open this publication in new window or tab >>Nurses’ perspectives on caring for hospice patients with weakening bodies
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Aim. To deepen the understanding of how nurses experience their care of dying patients with weakening bodies.

Background. A socio-cultural context that emphasizes healthy bodies might have consequences for attitudes toward sickness and weakness. Physical disease-based deterioration puts limits on opportunities to achieve a fit body. When dying patients’ bodies are deteriorating, they must rely on and receive body-care assistance. Few nursing studies explore nurses’ perceptions about caring for the body.

Method. Data were collected over a 3-month period in 2004-2005. Qualitative, conversational-style interviews were done to gather personal reflections of 19 nurses in a Swedish hospice ward. The approach of interpretative description was used to analyze the interviews.

Findings. A main theme – struggling to acknowledge and unveil the person within the weakening body – was synthesized from four subthemes, i.e., nurses: (1) striving to understand patients’ experiences of bodily losses; (2) encouraging patients to uphold bodily functions and daily habits; (3) acknowledging and balancing patients’ need of bodily control; and (4) providing tender body care.

Conclusion. Ways in which nurses interpret and care for bodies of dying patients influence how dying patients perceive their embedded selves at life’s end. Nurses struggled to promote person-oriented care by being flexible and creative and by using various strategies for body care that was aligned with the individual patient’s progression toward death. Person-oriented care was sometimes challenged when patients could not express their preferences or when the body became very deformed.

Keyword
body care, embodied caring, hospice nurse, interviews, palliative care, qualitative
National Category
Nursing
Research subject
Nursing Research w. Social Science Orientation
Identifiers
urn:nbn:se:oru:diva-5430 (URN)
Available from: 2009-02-09 Created: 2009-02-09 Last updated: 2014-09-24Bibliographically approved
3. Five nurses' experiences of hospice care in a long-term perspective
Open this publication in new window or tab >>Five nurses' experiences of hospice care in a long-term perspective
2008 (English)In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 10, no 4, 224-232 p.Article in journal (Refereed) Published
Abstract [en]

In this study, five nurses’ experiences of regularly having to face the incurable illness and death of dying patients were explored. Qualitative interviews were conducted on two occasions with an interval of 11 years. An interpretive method was used to discern the nurses’ thoughts, feelings, and attitudes over the years toward death and dying. The main finding was that working in hospice care and facing the dying and death of many patients had an impact both on daily work and private life. Narrations from the first occasion were conceptualized as the theme “Death as an Agent of Change.”  Eleven years later the presence of death took a less dominant place in the nurses’ lives and the theme became “Death as a Companion in Life“. In the long term nurses emphasized that their professional and personal growth was fostered by their relationship with the dying patients.

Place, publisher, year, edition, pages
Philadelphia, PA: Lippincott Williams & Wilkins, 2008
Keyword
death; dying; hospice care; palliative care; nursing
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-5431 (URN)10.1097/01.NJH.0000319164.43220.db (DOI)- ()- (PubMedID)2-s2.0-70349435404 (Scopus ID)
Available from: 2009-02-09 Created: 2009-02-09 Last updated: 2014-09-24Bibliographically approved
4. Making sense of life close to death
Open this publication in new window or tab >>Making sense of life close to death
(English)Manuscript (preprint) (Other academic)
Abstract [en]

This study’s aim was to find out how dying patients experience living near impending death. Eleven patient interviews were conducted via a palliative care unit that included a hospice ward and palliative home care. A qualitative, inductive design enabled descriptions of this complex situation. Analysis followed the Thorne et al. interpretive description approach. The findings revealed that when death became a reality, life took on new meanings and values (not in clear focus before) that were important to preserve or protect. This triggered need for feeling secure within this situation. These revelations were manifest in three subthemes that conceptualised the main theme Making sense of life close to death: (1) when possible death becomes a reality; (2) living with death as a reality and (3) a need for a feeling of security. How life can seem to dying patients demonstrates clinical relevance and complexity, which ensues when death is understood. Nurses must be aware of and respond to that complexity. Responding to patients who protect themselves from existential insight is a particular challenge; preserving their dignity requires being open to how life appears to them and following them as they give meaning to their existence. Dying patients have the right to be cared for according to their understanding of what it means to be dying.

Keyword
dying, interviews, lived experience, palliative care, patients, qualitative
National Category
Nursing
Research subject
Nursing Research w. Social Science Orientation
Identifiers
urn:nbn:se:oru:diva-5432 (URN)
Available from: 2009-02-09 Created: 2009-02-09 Last updated: 2014-09-24Bibliographically approved

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