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Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.ORCID iD: 0000-0003-0417-6161
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
2007 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 4, p. 324-334Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to acquire a deeper understanding of head and neck cancer patients' lived experiences of daily life during the trajectory of care, with a focus on eating problems. Nine patients were interviewed in an open dialogue approximately 6 to 8 weeks after completion of radiotherapy. The data analysis was carried out using interpretative phenomenology, inspired by Colaizzi (Existential Phenomenological Alternatives for Psychology; 1978:48-71). The essential structure emerged as "Needing a hand to hold" and consists of 3 interrelated themes, "Disruption of daily life," "Waiting in suspense," and "Left to one's own devices." The findings show that these patients experience a profound disruption in daily life due to eating problems and associated problems caused by the cancer and its treatment before, during, and after treatment. The treatment period was mostly experienced as safe and secure, but there were also experiences of insufficient information and lack of time to ask questions. Before and during pauses in radiotherapy and after completion of treatment, the informants were, to a large extent, left alone with their problems, questions, and worries about the future. To meet these patients' needs, the care must provide greater consistency and continuity throughout the whole trajectory of care.

Place, publisher, year, edition, pages
2007. Vol. 30, no 4, p. 324-334
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-2106DOI: 10.1097/01.NCC.0000281722.56996.07OAI: oai:DiVA.org:kau-2106DiVA, id: diva2:6499
Available from: 2007-04-11 Created: 2007-04-11 Last updated: 2025-10-16Bibliographically approved
In thesis
1. Eating problems in patients with head and neck cancer treated with radiotherapy: Needs, problems and support during the trajectory of care
Open this publication in new window or tab >>Eating problems in patients with head and neck cancer treated with radiotherapy: Needs, problems and support during the trajectory of care
2006 (English)Doctoral thesis, comprehensive summary (Other scientific)
Abstract [en]

Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense and severe during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III, IV). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected as one phenomenon, which disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, II, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessment, treatment and evaluation of patients’ problems, and the patients’ needs of information and support throughout the trajectory of care.

Place, publisher, year, edition, pages
Fakulteten för samhälls- och livsvetenskaper, 2006
Series
Karlstad University Studies, ISSN 1403-8099 ; 2006:7
Keywords
head and neck cancer patients, radiotherapy, eating problems, nutrition, support, trajectory of care, nurse clinics.
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-777 (URN)91-7063-038-0 (ISBN)
Public defence
2006-05-13, Geijersalen, hus 12, 09:00
Opponent
Supervisors
Available from: 2007-04-11 Created: 2007-04-11 Last updated: 2025-10-16

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Larsson, MariaHedelin, BirgittaAthlin, Elsy

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