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Hjemmesykepleie til eldre som bor på bygda med uhelbredelig kreft
Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
2016 (Norwegian)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The need to deliver high-quality palliative homecare has been underscored in current professional guidelines and demands for efficacy, as well as in the preferences of patients and their families. Indeed, demographic changes and an increased risk of cancer among older people pose challenges to the home healthcare settings in Norway and the rest of the world. Yet, little is known about how older persons experience living with incurable cancer and how palliative home nursing care may increase their quality of life. Moreover, few studies have focused on rural contexts or explored such settings can influence the delivery and outcome of care. In rural contexts, long distances and limited health-related human resources challenge the provision of specialised services, and palliative patients living in rural municipalities most often receive services from district nurses without special training in oncological or palliative care. The aim of this thesis was thus to explore experiences with, and meanings of, rural home nursing care among older persons living with incurable cancer. The thesis consists of five studies, all with qualitative designs, and performed in rural municipalities.Study I was designed as a case study involving individual interviews and observations to explore how older persons diagnosed with incurable cancer and living alone have experienced daily life while commuting for policlinic palliative chemotherapy. By extension, the aim of Study II, conducted as a secondary analysis of material collected in study I, was to illuminate and interpret the meanings of the lived experiences of the participants in that study. By contrast, Study III used individual interviews to illuminate and interpret the meaning of the lived experience of older persons with incurable cancer, yet who have received home nursing care. Meanwhile, Study IV entailed individual interviews with nurses working in home nursing care. Its aim was to illuminate and interpret the meaning of nurses' lived experiences among severely ill patients in their homes. Lastly, Study V involved individual interviews with bereaved family members; its aim was to explore their perceptions of suffering in older persons receiving palliative home nursing care during their final phase of life. The findings of Study I showed that older persons interviewed hovered between hope and fear, experienced stressful commutes, and were constantly exhausted. Experiences with long, tiring taxi trips, of having few supportive people nearby, and of being offered hardly any local healthcare services made these persons highly vulnerable. Nevertheless, their demands were few, and they rarely complained. The findings of Study II showed a complex, yet comprehensive situation in which physical symptoms and emotions had become entangled. Four themes were found: enduring by keeping hope alive, becoming aware of being one one's own, living up to expectations of being a good patient, and being at risk of losing identity and value. Suffering related to care, or the lack therefore, was the most striking discovery, and the older persons seemed to endure by keeping hope alive. Besides hoping for survival, their hopes also included a desire to be recognised and treated with respect, though such often seemed to go unnoticed. The findings of Study III revealed three themes: being content with what one gets, falling into place, and losing one's place. The phrase picking up the pieces was found useful for summing up the meaning of one's lived experience. In that sense, the three themes referred to how the pieces symbolized the remaining parts of life or services available in their environment and how the older persons might see themselves as pieces in a puzzle. Participants exhibited strong place attachment, involving physical insideness, social insideness, and autobiographical insideness, which suggested that the rural context might provide and advantageous healthcare environment. Interestingly, nurses' personal engagement and willingness to be involved in caring relationship appeared to be more important than any special competence or technical skills. The findings of Study IV showed that patients' expressions left impressions that caused emotional waves in the nurses. Four themes were found: being open for the presence of the Other, being satisfied, being frustrated, and being ambivalent. Understanding and balancing this emotional dimension in care seemed to cause confusion and distress for the nurses, and realizing how their feelings might prompt either generosity or aloofness towards the patient was upsetting. Thatinterpretation suggested confusion regarding what it means to be a professional nurse.Lastly, the findings of Study V showed that bereaved family members perceived suffering related to the illness, to the care, and to the life of their ill relatives during their final phase of life. Well-being emerged as having significant, contrasting elements. Well-being related to other people, to the home, and to activity, in all of which the essence referred to a state of dwelling-mobility. The findings suggested that nurses in this context need to seek out patients' and their families members' experiences with comfort and with disturbance. Nursing and palliative care that become purely disease- and symptom-focused can end with all parties' giving up and divert attention from social and cultural factors that may contribute to well-being when cure is not the goal.The findings of this thesis could alter some current knowledge in the field. From a patient perspective, the rural context is not necessarily disadvantaged, care is not necessarily caring, and the alleviation of suffering and cultivation of wellbeing are not necessarily two sides of the same coin. Home nursing care is often seen as a precondition for staying at home. Working in patients' homes allows nurses to witness and become involved in each patient's unique situation. However, impressions of patients' expressions awake feelings in nurses that have the power to bring about caring actions. At the same time, the fear of being unprofessional or unable to deliver proper care bothers nurses and might threaten the closeness that patients desire. Home nursing is care organized in a system in which services are predefined, apportioned, and bound to specific procedures, and the holistic ideals of the palliative care philosophy are often not within the framework of the system in which district nurses work.

Place, publisher, year, edition, pages
Sundsvall: Mittuniversitetet , 2016. , 108 p.
Series
Mid Sweden University doctoral thesis, ISSN 1652-893X ; 246
National Category
Nursing
Identifiers
URN: urn:nbn:se:miun:diva-27343ISBN: 978-91-88025-66-1 (print)OAI: oai:DiVA.org:miun-27343DiVA: diva2:915663
Public defence
2016-04-27, Juvika, Nord Universitet, Campus Namsos, Norge, 10:00 (Norwegian)
Supervisors
Note

Vid tidpunkten för disputationen var följande delarbeten opublicerade: delarbete v inskickat

At the time of the doctoral defence the following papers were unpublished: paper v submitted

Available from: 2016-03-30 Created: 2016-03-30 Last updated: 2016-03-30Bibliographically approved
List of papers
1. Don’t become a burden and don’t complain: a case study of older persons suffering from incurable cancer and living alone in rural areas
Open this publication in new window or tab >>Don’t become a burden and don’t complain: a case study of older persons suffering from incurable cancer and living alone in rural areas
2011 (English)In: Nursing Reports, ISSN 2039-439X, E-ISSN 2039-4403, Vol. 1, no 1Article in journal (Refereed) Published
Abstract [en]

The majority of older people wish to continue to live at home for as long as possible. As a consequence, the healthcare system, including cancer care, is located in urban areas and people living in rural areas must commute to gain access to the services offered. The aim of this study was to investigate how older people, who live on their own, experience living with incurable cancer and commuting for palliative care in rural Norway. A case study was designed and informants were recruited not because they were typical but because they were deemed to have the potential to contribute to knowledge about the phenomenon of being an older person who has been diagnosed with incurable cancer and lives alone in a rural area. Three major categories were identified: “Hovering between hope and fear, Stressful commuting to palliative care, and Being exhausted. The findings indicated that older people who have been stricken with incurable cancer and who live alone in rural areas have to walk the palliative path alone. A common feature of all the informants is that they do not speak out and they do not complain. Even though the trend in healthcare is towards centralized treatment, shorter and more effective stays in hospital, and policlinic (policlinic services are a place where healthcare services can be accessed without the need for an overnight stay in hospital, usually such clinics are located close to a hospital) treatment and care, not all older persons manage to take care of themselves. The findings suggest that nurses should pay more attention to these patients’ needs for care at different levels of the healthcare service.

National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-27341 (URN)10.4081/nursrep.2011.e3 (DOI)
Available from: 2016-03-30 Created: 2016-03-30 Last updated: 2017-11-30Bibliographically approved
2. Meanings of being old, living on one's own and suffering from incurable cancer in rural Norway
Open this publication in new window or tab >>Meanings of being old, living on one's own and suffering from incurable cancer in rural Norway
2013 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 6, 781-787 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of this study was to explore and understand the lived experience of older people living alone and suffering from incurable cancer in rural Norway. Methods and sample: Narrative interviews were conducted with five older people with incurable cancer (three women and two men, aged 71-79), receiving outpatient and life-prolonging chemotherapy and living alone in their homes in rural areas. A phenomenological hermeneutical approach was used to interpret the meaning of the lived experience. Key results: Four main themes were found: enduring by keeping hope alive, becoming aware that you are on your own, living up to expectations of being a good patient and being at risk of losing one's identity and value. Enduring this situation means struggling with terminal illness and facing death in a brave manner, and replacing former ways of living. The process of providing treatment may threaten dignity and cause additional distress. Conclusions: These results show a complex and comprehensive situation where physical symptoms and emotions are interwoven. Further the results describe how the ways of suffering caused by the manner in which care is delivered, suffering related to the cancer disease and existential suffering, may increase each other's impact. The social and rural context calls for special attention as the patients may lack recourses to gain sufficient care. Their comfort depends to a large extent on the health professionals' sensitivity. © 2013 Elsevier Ltd.

Keyword
Dignity, Incurable cancer, Older people, Phenomenological hermeneutics, Rural palliative care, Suffering
National Category
Health Sciences
Identifiers
urn:nbn:se:miun:diva-20676 (URN)10.1016/j.ejon.2013.03.009 (DOI)000328715900014 ()2-s2.0-84888050452 (Scopus ID)
Note

Source: Scopus

Available from: 2013-12-13 Created: 2013-12-13 Last updated: 2017-12-06Bibliographically approved
3. "Picking up the pieces'' - Meanings of receiving home nursing care when being old and living with advanced cancer in a rural area
Open this publication in new window or tab >>"Picking up the pieces'' - Meanings of receiving home nursing care when being old and living with advanced cancer in a rural area
2015 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 10, 28382Article in journal (Refereed) Published
Abstract [en]

Rural home nursing care is a neglected area in the research of palliative care offered to older cancer patients. Because access to specialized services is hampered by long distances and fragmented infrastructure, palliative care is often provided through standard home nursing services and delivered by general district nurses. This study aimed to illuminate the lived experience and to interpret the meaning of receiving home nursing care when being old and living with advanced cancer in a rural area in Norway. Narrative interviews were conducted with nine older persons, and a phenomenological hermeneutic approach was used to interpret the meaning of the lived experience. The analysis revealed three themes, each with subthemes: being content with what one gets, falling into place, and losing one's place. The phrase picking up the pieces was found useful to sum up the meaning of this lived experience. The three respective themes refer to how the pieces symbolize the remaining parts of life or available services in their environment, and how the older persons may see themselves as pieces or bricks in a puzzle. A strong place attachment (physical insideness, social insideness, and autobiographical insideness) is demonstrated by the informants in this study and suggests that the rural context may provide an advantageous healthcare environment. Its potential to be a source of comfort, security, and identity concurs with cancer patients' strong desire for being seen as unique persons. The study shows that district nurses play an essential role in the provision of palliative care for older rural patients. However, the therapeutic value of being in one's familiar landscape seems to depend on how homecare nurses manage to locate it and use it in a more or less person-centred manner. Communication skills and attentiveness to psychosocial aspects of patient care stand out as important attributes for nursing in this context.

Keyword
Advanced cancer, rural palliative care, homecare, district nursing, old people, identity, place attachment, qualitative research, phenomenological hermeneutics
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-26483 (URN)10.3402/qhw.v10.28382 (DOI)000361619100001 ()26362533 (PubMedID)2-s2.0-84942354179 (Scopus ID)
Available from: 2015-12-15 Created: 2015-12-15 Last updated: 2017-12-01Bibliographically approved
4. When expressions make impressions-Nurses' narratives about meeting severely ill patients in home nursing care: A phenomenological-hermeneutic approach to understanding
Open this publication in new window or tab >>When expressions make impressions-Nurses' narratives about meeting severely ill patients in home nursing care: A phenomenological-hermeneutic approach to understanding
2013 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 8, Art. no. 21880- p.Article in journal (Refereed) Published
Abstract [en]

Registered nurses (RNs) working in homecare encounter severely ill and palliative patients whose expressions may cause ethical challenges and influence their daily work. The aim of this qualitative study was to illuminate and interpret the meaning of nurses' lived experiences when meeting these patients. Narrative interviews were conducted with 10 RNs working in home nursing care. These interviews were audiotaped and transcribed verbatim to a text and interpreted by a phenomenological-hermeneutic method inspired by Ricoeur. The meaning of the RNs' lived experience of patients' expressions was formulated into four themes. The first theme, Being open for the presence of the Other, includes two subthemes: "Sensing vulnerability" and "Empathizing with." The second theme, Being satisfied, entails the subthemes, "Feeling exceptional" and "Being trusted." The third theme, Being frustrated, contains the subthemes, "Being disappointed" and "Being angry." The fourth and final theme, Being ambivalent, includes one subtheme: "Being generous or reserved." Patients' expressions that make impressions on nurses create emotional waves. Expressions leave impressions that call upon the nurse, and confront her with taking the risk of letting intuition and pre-reflexive feelings gain entry to her care. Allowing for the Other's presence is seen as a precondition, which means facing humanity and sensing a vulnerability in herself as well as in the Other. Understanding and balancing this emotional dimension in care seems to cause confusion and distress within the nurses. Realizing how their feelings may lead to either generosity or aloofness towards the patient is upsetting. Our interpretation suggests that these impressions echo confusion according to the role of being a professional nurse. There is a need to pay more attention to how the emotional dimension in care is understood and impacts the way nurses perform their professional role.

Keyword
Nurse-patient interactions, emotional dimension, touch, home nursing care, palliative care, professional identity, phenomenological-hermeneutic approach
National Category
Health Sciences
Identifiers
urn:nbn:se:miun:diva-20642 (URN)10.3402/qhw.v8i0.21880 (DOI)000325898000001 ()2-s2.0-84886686756 (Scopus ID)
Available from: 2013-12-11 Created: 2013-12-11 Last updated: 2017-12-06Bibliographically approved
5. Perceptions of suffering in older persons receiving palliative home nursing care: Bereaved family members' perspective
Open this publication in new window or tab >>Perceptions of suffering in older persons receiving palliative home nursing care: Bereaved family members' perspective
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-27342 (URN)
Available from: 2016-03-30 Created: 2016-03-30 Last updated: 2016-03-30Bibliographically approved

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