| 1. |
- Andreassen, Sissel, et al.
(författare)
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A meta-analysis of qualitative studies on living with oesophageal and clinically similar forms of cancer, seen from the perspective of patients and family members
- 2007
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - 1748-2623. ; 2:2, s. 114-27
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Tidskriftsartikel (refereegranskat)abstract
- This study is part of a research programme of which the aim is to generate knowledge about patients' and family members' experiences of living with oesophageal cancer from their perspective. The aim of the present study was to extend this knowledge by adding other forms of cancer: other upper gastrointestinal cancer, and head and neck cancer. These cancer forms have clinical similarities with oesophageal cancer and the survival rates are similar. This study is a qualitative meta-analysis that examines the results reported in 13 qualitative original research reports, published in peer-reviewed nursing journals between April 1998 and June 2006. We used thematic analysis. Three themes were formulated: “running into an unpredictable enemy”, “enduring a fading body” and “entering social silence”. Patients and family members gave voice to a suffering that involved the whole person. Our findings show that the whole person must be given care, and this care must include the whole family
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| 2. |
- Andreassen, Sissel, et al.
(författare)
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Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer
- 2005
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 14:5, s. 426-34
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Tidskriftsartikel (refereegranskat)abstract
- A qualitative study was conducted with the aim to describe family members' experiences, information needs and information seeking in relation to living with a patient suffering from oesophageal cancer. Data were collected by means of semi-structured interviews with nine family members. A content analysis was used in order to organize data. It was found that family members were not aware of the severe diagnosis and the illness caused intrusions on the family. The time following diagnosis family members' information seeking was low. They used interpersonal as well as mass media sources to obtain knowledge about and handle the uncertainty related to the illness. Some family members did not actively seek information. In conclusion, healthcare professionals are expected to improve quality of cancer care. These improvements are unlikely to occur without an understanding of family members' needs. This study shows that the family members were unprepared of receiving a diagnosis of oesophageal cancer. They emphasized the importance of including the children in the care given. Moreover, the whole family was faced with uncertainty, which led to intrusion on everyday life. Therefore, family members used different strategies for managing the uncertainty, whereof one was searching for information. The primary source of information was the physician.
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| 3. |
- Andreassen, Sissel, et al.
(författare)
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Information needs following a diagnosis of oesophageal cancer; self-perceived information needs of patients and family members compared with the perceptions of healthcare professionals : a pilot study
- 2007
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 16:3, s. 277-85
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Tidskriftsartikel (refereegranskat)abstract
- This pilot study was undertaken to describe patients' and family members' information needs following a diagnosis of oesophageal cancer and healthcare professionals' (HCP) perceptions concerning patients' and family members' information needs. Another aim was to describe patients' and family members' satisfaction with information provided. Data were collected by means of a self-report questionnaire. A total of 15 patients, 16 family members and 34 HCP participated. Patients and family members consider most information to be important. The high rating for information about tests/treatment and self-care means that both patients and family members consider this to be the most important areas of information. Healthcare professionals tend to underestimate both patients' and family members' needs for information. Patients and family members were only partly satisfied with the information received, with patients in general more satisfied with information given compared with family members. Patients' and family members' needs for information following a diagnosis of oesophageal cancer are substantial and have not been adequately met by HCP. A qualitative study might be helpful to complete the description of patients' and family members' needs. If a questionnaire is employed, it ought to be less extensive.
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| 4. |
- Andreassen, Sissel
(författare)
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Life Situation, Information Needs, and Information Seeking in Patients with Oesophageal Cancer and their Family Members
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis explores the experiences of living with oesophageal cancer from the perspective of patients and family members. Also, their needs for information and how they seek information in relation to the illness were investigated. The thesis comprises one qualitative meta-analysis and three empirical studies including data from patients, family members, and health-care professionals. Paper I was a qualitative meta-analysis the aim of which was to extend knowledge about patients' and family members' experiences of living with oesophageal cancer and clinically similar cancer forms, mainly head and neck cancer. As a result of the thematic analysis we have shown that both patients and family members 'run into an unpredictable enemy'. Patients had to 'endure a fading body' Running into an unpredictable enemy and enduring a fading body led to -entering social silence' for patients and family members.The aim of paper II was to describe patients' experiences of living with oesophageal cancer and how they seek information in relation to the illness. Data was collected by qualitative interviews with thirteen patients and analysed by qualitative content analysis. The findings describe patients' experiences of receiving the diagnosis, their experiences of vague symptoms, and of existential concerns evoked by the illness. Undergoing investigations and treatment caused extreme tiredness. Patients experienced that the illness intruded upon their daily life. In order to manage the life-threatening illness- they sought information about the illness.The aim of paper III was to describe family members' experiences of living with a patient suffering from oesophageal cancer, their information needs and information seeking Data was collected by means of qualitative interviews with nine family members and analysed by qualitative content analysis. The findings describe that family members lacked awareness of the disease. When faced with the diagnosis, shock, stress, and disbelief were evoked . The cancer illness became intrusive into their everyday lives, routines, and life plans. Uncertainty about the course and prognosis of the disease was the main source of distress among them. In order to learn, obtain understanding for the illness, and manage this uncertainty, family members entrusted themselves to the experts and sought information from them.Paper IV was a pilot study the aim of which was to describe patients' and family members' information needs following a diagnosis of oesophageal cancer, their satisfaction with information obtained, and health-care professionals' perceptions concerning patients' and family members' information needs. Data was collected by means of a study-specific questionnaire and analysed with descriptive statistics. The results indicate that patients' and family members need for information following a diagnosis of oesophageal cancer was substantial and had not been adequately met by health-care professionals.In conclusion, the receipt of the diagnosis of oesophageal cancer was an abrupt change from feeling healthy with vague symptoms to having a life-threatening illness. The illness disrupts patients' and family members' social world and relationships, and the whole family is affected. For understanding and managing the illness, they sought information from health-care professionals, social networks, and various media
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| 5. |
- Andreassen, Sissel, et al.
(författare)
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Patients' experiences of living with oesophageal cancer
- 2006
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 15:6, s. 685-95
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: The aim of this study is to describe patients' experiences of living with oesophageal cancer and how they seek information. BACKGROUND: Oesophageal cancer is a devastating disease with poor prognosis. Nursing care for individuals with oesophageal cancer requires increased knowledge of how they experience illness and how it affects them. METHOD: Data were collected by semi-structured, qualitative interviews with 13 participants. Content analysis was used to analyse data. RESULTS: Four themes were identified: (i) Experiences of becoming a patient diagnosed with oesophageal cancer is distinguished by the participants' experiences of vague symptoms, of receiving the diagnosis and of existential concerns evoked by the illness. (ii) Experiences of undergoing investigations and treatment consist of the participants' experiences of extreme tiredness in relation to investigations and treatment. (iii) Experiences of intrusions in daily life is conceptualized by the participants' experiences of how the illness influenced their daily life. (iv) Managing a life-threatening illness consists of a variety of strategies, which the participants employed to manage their life-threatening illness. CONCLUSIONS: The participants were unprepared of receiving a diagnosis of oesophageal cancer. Dysphagia, fatigue and uncertainty influenced the participants' everyday life. To manage the illness one of their strategies was seeking for information. The physicians were considered the main source of information, but family as well as friends with medical knowledge were also acknowledged as valuable sources. RELEVANCE TO CLINICAL PRACTICE: Understanding patients' experiences of living with oesophageal cancer is important to improve nursing care. When caring for these patients, focus ought to be on the whole family. In nursing care, it is important to be aware of the effects of dysphagia and fatigue. Health-care professionals ought to organize meetings with fellow patients and recommend literature and websites that provide patients with high quality information.
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| 6. |
- Axelsson, Lena, et al.
(författare)
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Living with haemodialysis when nearing end of life
- 2012
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 26:1, s. 45-52
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: The aim of this study was to describe and to elucidate the meanings of being severely ill living with haemodialysis when nearing end of life.INTRODUCTION: To have end stage renal disease and to be treated with maintenance haemodialysis implies being dependent on lifelong treatment. Several studies have reported that these patients suffer a high symptom burden and an impaired quality of life due to both disease and treatment. In the dialysis unit, where the focus is on handling technology and maintaining life, end of life care may be neglected or overlooked. Nevertheless, mortality rates show that about one-fourth of patients in haemodialysis care are in their last year of life.DESIGN: A qualitative interpretative design was used.METHODS: Serial qualitative interviews over a period of 12 months were conducted with eight patients (aged 66-87). Altogether text of 31 interviews was interpreted using a phenomenological hermeneutical method in three phases. The study is ethically approved.FINDINGS: The structural analysis resulted in 11 subthemes and thereafter the following three themes were formulated; being subordinate to the deteriorating body, changing outlook on life and striving for upheld dignity. The comprehensive interpretation revealed that being severely ill living with haemodialysis near the end of life means living with suffering simultaneously with reconciliation and well-being. Further, the meanings are understood as intertwined with being old.CONCLUSIONS: Findings contribute to an increased awareness of the complexities of these patients' life worlds and their meanings, and thus of the importance to listen to their experiences and their understandings. Findings suggest that to integrate the philosophy of palliative care in haemodialysis units may improve care for patients who are living with haemodialysis and approaching the end of their lives.
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| 7. |
- Axelsson, Lena, et al.
(författare)
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Swedish Registered Nurses' incentives to use nursing diagnoses in clinical practice
- 2006
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 15:8, s. 936-45
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: The purpose of this study was to describe Registered Nurses' incentives to use nursing diagnoses in clinical practice. BACKGROUND: The use of nursing diagnoses is scarce in Swedish patient records. However, there are hospital wards were all nurses formulate and use nursing diagnoses in their daily work. This leads to the question of what motivates these nurses who do use nursing diagnoses in clinical practice. DESIGN: A qualitative descriptive design. METHODS: A purposeful sampling of 12 Registered Nurses was used. Qualitative interviews to collect data and a content analysis were performed. RESULTS: Five categories were identified: identification of the patient as an individual and as a whole, a working tool for facilitating nursing care, increasing awareness within nursing, support from the management and influence on the professional role. The principle findings of this study were: (i) that the Registered Nurses perceived that nursing diagnoses clarified the patient's individual needs and thereby enabled them to decide on more specific nursing interventions, (ii) that nursing diagnoses were found to facilitate communication between colleagues concerning patient care and thus promoted continuity of care and saved time and (iii) that nursing diagnoses were perceived to increase the Registered Nurses' reflective thinking leading to a continuous development of professional knowledge. CONCLUSIONS: The present findings suggest that the incentives to use nursing diagnoses originate from effects generated from performing a deeper analysis of the patient's nursing needs. Further research is needed to test and validate the usability and consequences of using nursing diagnoses in clinical practice. Motivating factors found in this study may be valuable to Registered Nurses for the use and development of nursing diagnoses in clinical care. Moreover, these factors may be of relevance in other countries that are in a similar situation as Sweden concerning application of nursing diagnoses.
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| 8. |
- Axelsson, Lena, et al.
(författare)
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Thoughts on death and dying when living with haemodialysis approaching end of life
- 2012
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 21:15-16, s. 2149-59
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To describe inner thoughts and feelings relating to death and dying when living with haemodialysis approaching end of life.BACKGROUND: Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the presence of death and dying in the haemodialysis unit.DESIGN: A qualitative descriptive design was used. Methods. A total of 31 qualitative interviews were conducted with eight patients (aged 66-87) over a period of 12 months. Qualitative content analysis was used to analyse data.RESULTS: The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and reflections on haemodialysis withdrawal as an hypothetic option.CONCLUSIONS: Living with haemodialysis approaching, the end of life involves significant and complex existential issues and suffering, and patients are often alone with their existential thoughts.RELEVANCE TO CLINICAL PRACTICE: Nurses and other healthcare professionals in haemodialysis settings need to combine technical and medical abilities with committed listening and communication skills and be open to talking about death and dying, with sensitivity to individual and changeable needs.
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| 9. |
- Berglund, Britta, et al.
(författare)
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Dignity not fully upheld when seeking health care : Experiences expressed by individuals suffering from EhlersDanlos syndrome
- 2010
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Ingår i: Disability and Rehabilitation. - : Informa Healthcare. - 0963-8288 .- 1464-5165. ; 32:1, s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care. PURPOSE: To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences. METHOD: A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective. RESULTS: After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'. CONCLUSIONS: The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.
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| 10. |
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