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Hopp hos döende patienter med cancer i palliativ hemsjukvård
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. (Palliativt kompetenscentrum i Östergötland)
2011 (Swedish)Licentiate thesis, comprehensive summary (Other academic)Alternative title
Hope among dying cancer patients in palliative home care (English)
Abstract [en]

Hope is meaningful and very important for people – even for people at the last days of their lives. Health professionals can sometimes describe hope in terms of hope for a cure, which may lead to feelings of hopelessness or empty hope for a patient with an incurable disease. In research, there is very little written about hope in the palliative home care context, even more so from the patient’s perspective. The aim of this project was to study how hope changes over time in cancer patients at the palliative phase, and to study the strategies used to cope with these changes. This was studied from the patients’ own perspective and in a home care context, but with the ambition of developing the results into a model or theory.

Grounded Theory was the chosen research approach. Two sets of tape-recorded interviews were made with 11 patients in specialized palliative home care – a total of 20 interviews. The patients were also asked to write diaries about changes in their everyday feelings of hope within a 4-week period. Measurements of hope (HHI-S) and symptoms (ESAS) were also made at three occasions. Constant comparison of data was made during the analysis.

The results showed that patients’ hope changed over time. Hope was described as a process involving a glimmering core of hope untouched by external circumstances (Study I). Hope was described in different processes, creation of a convinced hope, creation of simulated hope, collection and maintaining moments of hope and gradually extinct hope. The dying patient’s hope can be described as a gradual and successive adaptation process. Strategies for maintaining life were expressed to preserve the meaning in life, to communicate with others about life and death, to involve "fellow travelers" and to change focus. The strategy of preparing for death involved; taking responsibility for the future and seeing possibilities of living on even after death (Study II). The strategies were parallel to, and dependent on each other. It is important that health professionals understand the patient’s own strategies for maintaining life/hope, as well as the patient’s own preparations for death, so that hope is never taken away despite preparations at the end of life.

In summary, hope can be interpreted as a changing process over time – a process that can change quickly, but is based on an inviolable core that is not easily moved by external circumstances. It is important that the health care personnel realize that patients simultaneously prepare for their deaths even as they try to maintain hope. Deeper understanding of what hope can mean for a patient can decrease the risk of hope being taken away during one’s final days.

Abstract [sv]

Hopp har stor betydelse för människor, även för människor i livets slutskede. Av vårdpersonal beskrivs ibland hopp som bot, vilket kan leda till att inget hopp alls eller att ett meningslöst hopp förmedlas till en patient med en obotlig sjukdom. Forskningsmässigt förekommer hopp sparsamt beskrivet i den palliativa kontexten, särskilt från patientens perspektiv. Syftet med avhandlingen var att studera hur hopp kan förändras över tid hos patienter med cancer i ett palliativt skede, liksom vilka strategier de använder för att hantera dessa förändringar. Detta har studerats utifrån patientens eget perspektiv i en palliativ hemsjukvårdskontext, men ska sedan utvecklas vidare till en modell/teori.

I denna avhandling har Grounded Theory valts som forskningsansats. Bandinspelade intervjuer gjordes vid två tillfällen med elva patienter i specialiserad palliativ hemsjukvård. Det blev totalt 20 intervjuer. Patienterna skrev också dagböcker om de förändringar av deras hopp, som uppstod i vardagen under en period av fyra veckor. Även mätning av hopp (HHIS) och symtom (ESAS) genomfördes vid tre tillfällen. Analysen skedde med den konstant komparativa metoden. Resultatet visade att patientens hopp förändrades över tid och beskrevs i en process med en inre glödande kärna av hopp, som inte påverkades så mycket av yttre omständigheter, men som kunde falna eller flamma upp (studie I). Hopp beskrivs i olika processer som att skapa ett övertygat hopp, ett simultant hopp, som att samla och uppehålla hopp och som ett hopp, som håller på att rinna ut. Den döende patientens hopp kan skildras som en successiv anpassningsprocess. Strategier som upprätthåller liv beskrivs vara att upprätthålla sin egen mening, att samtala om liv och död, att skaffa medresenärer och att byta fokus (studie II). Strategier, som förberedde döden, var att ta ansvar för framtiden och att se möjligheter att leva vidare även efter döden. Dessa tillvägagångssätt var parallella och beroende av varandra. Kunskap hos vårdpersonal om patientens egna strategier att upprätthålla liv/hopp och förbereda död är viktigt, för att inte ta ifrån patienten dennes hopp vid samtidig förberedelse för döden.

Sammanfattningsvis ska hopp ses som en föränderlig process över tid och som snabbt kan förändras, men som har en inre glöd, som är mer oantastlig och inte så lätt påverkas av yttre omständigheter. Det är viktigt för vårdpersonal, som arbetar med döende patienter, att känna till att patienter har parallella strategier, som upprätthåller hopp. Ökad kunskap om vad hopp innebär för den enskilde patienten kan minska risken för att hopp fråntas patienten i livets sista tid.

Place, publisher, year, edition, pages
Linköpings universitet: Linköping University Electronic Press , 2011. Vol. 9, no 1, 44 p.1-12- p.
Series
Linköping Studies in Health Sciences. Thesis, ISSN 1100-6013 ; 114
Keyword [en]
hope, meaning, grounded theory, cancer, palliative care
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-64098ISBN: 978-91-7393-283-7 (print)OAI: oai:DiVA.org:liu-64098DiVA: diva2:386722
Presentation
2010-11-19, Campus Norrköping, Linköpings universitet, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Projects
The Glimmering Embers - experiences of hope among cancer patients in palliative home careMaintaining hope when close to death: insight from cancer patients in palliaitve home care
Available from: 2011-02-21 Created: 2011-01-13 Last updated: 2015-06-10Bibliographically approved
List of papers
1. The Glimmering Embers: Experiences of hope among cancer patients in palliative home care
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2011 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 1, 43-54 p.Article in journal (Refereed) Published
Abstract [en]

The experience of hope among cancer patients in palliative care is important knowledge for health care providers, but research is sparse. The aim of this paper was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during six weeks throughout the last phase of their life and to assess their symptoms and hope status during six weeks throughout the last phase of their lives.

Eleven adult patients with cancer participated in twenty interviews and completed seven diaries. The participants were recruited from two palliative care units in South-East of Sweden. The methods used were Grounded Theory (GT), and analysis was based on the constant comparative method.

The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope”, including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out. The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

Place, publisher, year, edition, pages
Cambridge University Press, 2011
Keyword
Hope, meaning, grounded theory, cancer, palliative care
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-65794 (URN)10.1017/S1478951510000532 (DOI)
Available from: 2011-02-21 Created: 2011-02-21 Last updated: 2017-12-11Bibliographically approved
2. Maintaining hope when close to death: insight from cancer patients in palliative home care
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2010 (English)In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 12, no 12, 607-612 p.Article in journal (Refereed) Published
Abstract [en]

This article reports the social and psychological processes that 11 cancer patients receiving palliative home care used to keep their hope alive. Method: The patients described their ways of dealing with hope in interviews and diaries, and it was from these accounts that the processes were extracted, using a grounded theory methodology. Results: Two main processes emerged: maintaining life and preparing for death. When the patients focused on maintaining life, they tried to preserve its meaning and to communicate with others about life and death. They found it helpful to shift their focus and to involve fellow 'travellers' in their journey. To prepare for death was to take responsibility for the future and to see possibilities of living on even after death. Conclusion: This paper revealed two parallel and interdependent processes used by patients in the palliative care phase to maintain hope and respond to living close to death.

Place, publisher, year, edition, pages
London: Mark Allen group, 2010
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-65406 (URN)
Note
The original title of this article was "Strategies for maintaining hope when close to death: aninterview study of cancer patients in palliative home care"Available from: 2011-02-07 Created: 2011-02-07 Last updated: 2017-12-11Bibliographically approved

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