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Deciphering Unwritten Rules: Patients, relatives and nurses in palliative cancer care
Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.ORCID iD: 0000-0002-3155-575x
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis focuses on palliative cancer care in acute care hospitals and home care settings. The overall aim was to generate a grounded theory explaining the latent patterns of behavior of patients, relatives and nurses. The thesis includes one population-based study with cross-sectional design and four classic grounded theory studies.

Study I was conducted in two acute care hospitals. In this 5-year follow-up study, the proportion of hospitalized palliative cancer patients had decreased. The patients were older with more symptoms and care needs per patient. In both years, the most common symptoms were pain and deterioration and the most common cancer sites were prostate and colorectal. The results showed that associations between symptoms, care needs and cancer site were mostly weak.

In study II, striving for emotional survival emerged as the pattern of behavior through which nurses in acute care hospitals deal with their main concern, the risk of being emotionally overloaded. Striving for emotional survival involves emotional shielding, emotional processing and emotional postponing.

In study III, doing good care emerged as the pattern of behavior through which nurses in home care deal with their main concern, their desire to give good care. Doing good care involves three different caring behaviors: anticipatory caring, momentary caring and stagnated caring.    

In study IV, living on hold emerged as the pattern of behavior through which patients and relatives deal with their main concern, being put on hold. Living on hold involves three modes: fighting, adjusting and surrendering.

The overall theory, deciphering unwritten rules, explains how patients, relatives and nurses are dealing with the uncertainty of how to act and behave.   Deciphering unwritten rules involves figuring out, deliberating, maneuvering and evaluating.

In conclusion, this thesis demonstrates the complexities of palliative cancer care and the importance of knowledge, resources and counseling. Patients should be cared for at the right care level according to their care needs and the care focus should be on treating symptoms irrespective of the diagnosis. The palliative care approach therefore needs to be implemented in all caring contexts with dying people.

Place, publisher, year, edition, pages
Växjö, Kalmar: Linnaeus University Press , 2010.
Series
Linnaeus University Dissertations ; 14/2010
Keywords [en]
cancer, deciphering, unwritten rules, grounded theory, nursing, palliative care, patient, relative
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
URN: urn:nbn:se:lnu:diva-2502ISBN: 978-91-86491-19-2 (print)OAI: oai:DiVA.org:lnu-2502DiVA, id: diva2:310790
Public defence
2010-05-21, Myrdal, Växjö, 10:30 (Swedish)
Opponent
Supervisors
Available from: 2010-04-21 Created: 2010-04-16 Last updated: 2018-05-17Bibliographically approved
List of papers
1. Symptoms, care needs and diagnosis in palliative cancer patients in acute care hospitals: A 5-year follow-up survey
Open this publication in new window or tab >>Symptoms, care needs and diagnosis in palliative cancer patients in acute care hospitals: A 5-year follow-up survey
Show others...
2010 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 49, no 4, p. 460-466(7)Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Palliative cancer care in acute hospitals is scarcely studied. We therefore described and compared symptoms, care needs and types of cancer sites in 2002 compared to 2007 and analysed the relationships between these factors. METHODS: The study was population-based with a cross-sectional design and was carried out in medical, surgical and oncology wards in two acute care hospitals with no advanced palliative home care service. In 2002, 82 one-day-inventories were done (1 352 patients) compared to 142 one-day-inventories in 2007 (2 972 patients). Symptoms, care needs and cancer site were registered according to a questionnaire. Multiple logistic regression models were used to analyse associations between symptoms, care needs and cancer site. RESULTS: The proportion of palliative cancer patients had decreased during a five year period (14% vs. 11%, p<0.01). The patients were older in 2007 (74 vs. 70 years, p<0.001) and had more symptoms and care needs per patient (2.6 vs. 1.6, p<0.001). The most common symptoms were pain and deterioration and the most common cancer sites were prostate and colorectal cancer in both samples. Associations between symptoms, care needs and cancer site were mostly weak. Deterioration was associated with colorectal cancer, whereas pain was not associated with any specific cancer site. In haematological malignancies there was a high occurrence of infections and a high need of blood transfusions and infusions. Stomach/oesophagus cancers were significantly associated with nausea, nutritional problems and need of infusions while unknown primary malignancies were associated with abdominal surgery and infusions. DISCUSSION: Although we do not know all the causes for hospitalization, this study indicates that more focus should be on the symptoms instead of the specific cancer diagnosis. The findings also indicate that many palliative cancer patients' problems would be suitable for advanced palliative home care instead of acute hospital care.

Place, publisher, year, edition, pages
Informa Healthcare, 2010
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-2500 (URN)10.3109/02841860903463991 (DOI)000276762700010 ()20121671 (PubMedID)
Available from: 2010-04-16 Created: 2010-04-16 Last updated: 2019-04-16Bibliographically approved
2. Living on hold in palliative cancer care
Open this publication in new window or tab >>Living on hold in palliative cancer care
2010 (English)In: The Grounded Theory Review, ISSN 1556-1542, E-ISSN 1556-1550, Vol. 9, no 1, p. 79-100Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to develop a classic grounded theory of palliative cancer patients and their relatives in the context of home care. We analyzed interviews and data related to the behaviour of both patients and relatives. “Living on hold” emerged as the pattern of behaviour through which the patients and relatives deal with their main concern, being put on hold. Living on Hold involves three modes: Fighting, Adjusting and Surrendering. Mode being may change during a trajectory depending on many different factors. There are also different triggers that can start a reconciling process leading to a change of mode. This means that patients and relatives can either be in the same mode or in different modes simultaneously. More or less synchronous modes may lead to problems and conflicts within the family, or with the health professionals.

Place, publisher, year, edition, pages
Mill Valley, CA: Sociology Press, 2010
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-2501 (URN)
Available from: 2010-04-16 Created: 2010-04-16 Last updated: 2019-04-15Bibliographically approved
3. Striving for emotional survival in palliative cancer nursing
Open this publication in new window or tab >>Striving for emotional survival in palliative cancer nursing
2006 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 16, no 1, p. 79-96Article in journal (Refereed) Published
Abstract [en]

In this grounded theory study, the authors analyze interviews and participant observation data related to palliative cancer nursing in hospitals. Striving for Emotional Survival emerged as the pattern of behavior through which nurses deal with their main concern, the risk of being emotionally overloaded by their work. It involved three main strategies: Emotional Shielding through Professional Shielding or Cold Shielding; Emotional Processing through Chatting, Confirmation Seeking, Self-Reflecting, or Ruminating; and Emotional Postponing through Storing or Stashing. Emotional Competence is a property of Striving for Emotional Survival that explains more or less adequate ways of dealing with emotional overload. The theory Striving for Emotional Survival can be useful in the nurses' daily work and provides a comprehensive framework for understanding how nurses deal with emotional difficulties. The authors suggest that health care organizations encourage self-care, prioritize time to talk, and offer counseling to nursing staff with emotionally difficult working conditions.

Place, publisher, year, edition, pages
Sage Publications, 2006
Keywords
cancer, grounded theory, nursing, palliative care, striving for emotional survival
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:vxu:diva-3871 (URN)10.1177/1049732305283930 (DOI)
Available from: 2007-02-26 Created: 2007-02-26 Last updated: 2019-04-15Bibliographically approved
4. "Doing good care" - a study of palliative home nursing care
Open this publication in new window or tab >>"Doing good care" - a study of palliative home nursing care
2007 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 2, p. 227-235, article id 4Article in journal (Refereed) Published
Abstract [en]

Today, more and more people die in own homes and nursing homes, which fundamentally affects community nursing. The aim of this study was to develop a classic grounded theory of palliative home nursing care and we analysed interviews and data related to the behavior of community nurses caring for palliative cancer patients. Doing Good Care emerged as the pattern of behavior through which nurses deal with their main concern, their desire to do good. The theory Doing Good Care involves three caring behaviors; Anticipatory caringMomentary caring and Stagnated caring. In Anticipatory caring, which is the optimal caring behavior, nurses are doing their best or even better than necessary, in Momentary caring nurses are doing best momentarily and in Stagnated caring nurses are doing good but from the perspective of what is expected of them. When nurses fail in doing good, they experience a feeling of letting the patient down, which can lead to frustration and feelings of powerlessness. Depending on the circumstances, nurses can hover between the three different caring behaviors. We suggest that healthcare providers increase the status of palliative care and facilitate for nurses to give Anticipatory care by providing adequate resources and recognition.

Place, publisher, year, edition, pages
Taylor & Francis, 2007
Keywords
Anticipatory caring, classic grounded theory, community nurses, momentary caring, palliative care, stagnated caring
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:vxu:diva-3007 (URN)10.1080/17482620701650299 (DOI)
Available from: 2008-01-14 Created: 2008-01-14 Last updated: 2019-04-15Bibliographically approved

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