| 31. |
- Carlsson, Eva
(författare)
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Understanding Persons with Eating Difficulties and Communication Impairment after Stroke : Patients Experiences and Methodological Issues in Qualitative Interviews
- 2006
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Difficulties with eating are common after stroke and are often associated with communication problems. Although numerous aspects of dysfunction have been identified, little is known about the experiences of living with eating difficulties after stroke. A few researchers have attempted to explore how best to ensure that the voices of people with communication impairment can be captured in qualitative research interviews, but several methodological issues related to including this population in qualitative research have remained unexamined. The purpose of the thesis was to illuminate the phenomenon of eating difficulties after stroke and to discuss methodological issues involved in interviewing persons with communication impairment. Study I had a qualitative, descriptive design involving repeated interviews and participant observations with three persons 1½ years post-stroke. Eating difficulties after stroke were experienced as Striving to live a normal life with the sub-themes Abandoned to learn on one’s own, Experiences of losses, and Feeling dependent. The findings showed that “eating difficulties after stroke” is a complex phenomenon, and that, based on the experiences of stroke survivors, there is a need for health care professionals to develop and use methods for eating training and other forms of support during the continuum of care. The combination of repeated interviews and participant observations seemed to be an approach that should be tested in larger studies. Study II was a methodological exploration based on the experiences gained in Study I and in a qualitative study involving persons with traumatic brain injury. Methodological issues related to sampling, obtaining informed consent, and fatigue in participant and researcher were discussed, and strategies for conducting qualitative interviews with these populations were suggested.
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| 32. |
- Edvardsson, Tanja I., et al.
(författare)
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Subjective quality of life in persons with low-grade glioma and their next of kin
- 2009
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Ingår i: International Journal of Rehabilitation Research. - Baltimore, Md. : Lippincott Williams & Wilkins. - 0342-5282 .- 1473-5660. ; 32:1, s. 64-70
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Tidskriftsartikel (refereegranskat)abstract
- Patients with low-grade glioma have a longer survival than patients with highly malignant glioma, and for this reason questions of quality of life (QoL) are of particular importance to such patients as well as to their next of kin. No studies have been found in which both adult patients with low-grade glioma and their next of kin have estimated their own QoL. This study was therefore designed to investigate the subjective QoL of these two groups. Thirty-nine patients with low-grade glioma selected from a well-defined county population and 27 next of kin participated in the study. The questionnaire used in the study was the subjective estimation of QoL. The main results and conclusions are as follows: the variable absence of work/meaningful occupation showed statistically significant lower ratings among patients than among next of kin. The results show significant influence mainly on the patients' and their next of kin's internal psychological condition; related to background variables but the pattern in the results was inconsistent. There is a need for recurrent rehabilitation during this long-term disease, and a need to give vocational rehabilitation to support the patient's desire to have a meaningful occupation. It is also of importance to include the patient's next of kin when offering rehabilitation.
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| 33. |
- Ek, Kristina
(författare)
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Att leva med mycket svår kronisk obstruktiv lungsjukdom : ett liv i slowmotion
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to describe how people with very severe obstructive pulmonary disease (COPD) experienced their every day lives and created meaning, with focus on end-of-life. A second aim was to describe how death and dying can be viewed from the perspective of relatives to people with COPD. In study I, eight patients were interviewed about how COPD affected their everyday lives. A phenomenological method was used. In study II, four people with COPD who lived alone were interviewed over time, to illuminate how the illness influenced their everyday life and their existential thoughts about life and death. In study III, four couples of whom one partner in each couple had COPD were interviewed several times to illuminate the affect the illness had on the spousal relationship, their self-expressed needs, and their existential thoughts, from the perspective of two people living together. A phenomenological-hermeneutic method was used for the analyses in studies IIand III. Study IV aimed at studying patients’ last six months of life with focuson dying and death, and in this study content analysis was used.The studies (I-IV) revealed that suffering from very severe COPD can be a daily struggle to survive as well as to maintain the self-image. The studies also explicate experiences of a shrinking life space, and questions of meaning were being challenged (I). Study II showed that living alone provided feelings of independency. However the bodily losses reminded the patients’ about death and raised fears about death of being painful, as they did not want to face death alone. For the couples in study III living with COPD meant living in a changed pace with uncertainty, changed intimate relationship and finding new ways of living together. Study IV outlined the trajectory of illness to be irregular and characterized by periods of sudden deterioration, making it difficult to plan for the future. Death was experienced as an unexpected experience and was described by all as peaceful. The results in this thesis have outlined important insight into the existential challenges of living with COPD as experienced by the ill persons themselves and their next of relatives.
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| 34. |
- Ekwall, Ewa, 1950-, et al.
(författare)
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Important aspects of health care for women with gynecologic cancer
- 2003
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Ingår i: Oncology Nursing Forum. - Pittsburg : Oncology Nursing Society. - 0190-535X .- 1538-0688. ; 30:2, s. 313-319
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Tidskriftsartikel (refereegranskat)abstract
- Purpose/Objectives: To describe what women diagnosed with primary gynecologic cancer reported to be important during their interacion with the healthcare system. Design: Qualitative. Setting: A specialized gynecologic cancer care unit in central Sweden. Sample: 14 women diagnosed with primary gynecologic cancer were recruited. The women had been referred to the specialized care unit for radiation or cytostatic therapy. Methods: Tape-recorded interviews were transcnbed, coded, categoized, and analyzed. Main Research Variables: Primary diagnosed women with cancer and their experience with quality of care during diagnosis and treatment. Findings: Three partly overlapping categories (i.e., optima! care,good communication, and self-image and sexuality) were found to be of central importance in quality of health care. Participants stated that health care should be based on their own perceptions of the need for information and dialogue and how the disease and treatment would affect their health, self-image, and sexuality. Everyday conversations also were very important. Conclusions: Central importance in health care for the women included both rational and human aspects. The primary need of participants was available, competent, and coordinated. Implications for Nursing: Women with gynecologic cancer should be given individualized information and care to satisfy their individual needs and reinforce their self-image. Nurses have an important role in strengthening women´s feelings of hope and supporting them in maintaining as positive a self-image as possible. Information and everyday conversation are of great significance. Sexuality should be an integral part of holistic care; to this end, inclusion of each woman's sexual partner may be helpful when discussions concerning sexuality occur.
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| 35. |
- Ekwall, Eva, 1950-, et al.
(författare)
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Recurrence of ovarian cancer : living in limbo
- 2007
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Ingår i: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 30:4, s. 270-277
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Tidskriftsartikel (refereegranskat)abstract
- Few studies have shed light on women's life situation after being informed of having recurrent ovanan cancer, The present study aimed to elucidate women's experiences of living with this knowledge. interviews were conducted with 12 women who were undergoing or had just completed chemotherapy, 5 to 10 months after learning or the recurrence. Data were collected and analyzed based on a life world perspective using a descriptive phenomenoiogical method. The women's experiences are described via 3 key constituents: being denied one's future while simultaneously hoping to be ble to delay the cancer's advancement, feeling alienated from both oneself and one's surroundings, and being responsible. The key constituents were integrated into the structure "living in limbo." The women lived on the threshoid to the unknown. They were preparing themselves both for a continued life and for death. "Living in limbo" can be described as a phase of a health-illness transition characterized by loneliness. The vulnerable position and existential struggle of these women should be focused upon in nursing. The sensitive dialogue is essential in these cases.
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| 36. |
- Ekwall, Eva, 1950-, et al.
(författare)
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The lived experience of life-prolonging treatment of recurring ovarian cancer
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- There has been an improvement in the effectiveness of chemotherapy agents to restrain recurring ovarian cancer, such that women live with the disease for longer than they used to. However, there is a knowledge gap concerning how patients define their world from a lifeworld perspective, when living with life-prolonging treatment. The aim of the study was to illuminate the phenomenon of living with life-prolonging treatment of recurring ovarian cancer. Four women were interviewed twice, once in 2003, three years after the first recurrence, and again in 2005. The method was based on Giorgi’s phenomenological method. A situated structure for each woman was followed by a transformation into a general structure for all women, which communicates the most invariant meaning of the phenomenon.The general structure showed the growing threat to the women’s existence and their perception that time was short, yet extendable. Awareness of life’s limitedness evoked gratitude for the possibility to postpone death. The body’s strength was increasingly fragile and jeopardized the restraining of the disease. The amount of strength available was unpredictable, which meant a break in the rhythm of everyday life. Strength had to be captured and cared for.The wish to share the meaning of the disease with others was expressed as unattainable. The women were unable to realize the desire to be seen as an example of someone living with ongoing treatments. In encounters with other people, the cancer-afflicted body stood out as a barrier to communication. Inability to share their experience was also manifested in the women’s encounters with caregivers, which were characterized by an objective attitude. The women met with a gradual compliance their caregivers’ inability to respond to them.
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| 37. |
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| 38. |
- Eldh, Ann Catrine, et al.
(författare)
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Conditions for patient participation and non-participation in health care
- 2006
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Ingår i: Nursing Ethics. - Malden, USA : SAGE Publications. - 0969-7330 .- 1477-0989. ; 13:5, s. 503-514
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Tidskriftsartikel (refereegranskat)abstract
- This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making.
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| 39. |
- Eldh, Ann Catrine, 1965-
(författare)
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Patient participation : what it is and what it is not
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.
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| 40. |
- Eldh, Ann Catrine, et al.
(författare)
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The meaning of patient participation for patients and nurses at a nurse-led clinic for chronic heart failure
- 2006
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 5:1, s. 45-53
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundThe legislation of many Western countries emphasizes active patient participation. Patients with chronic heart failure (CHF), however, have experienced participation differently from the general interpretation of legal definitions. Education improves uptake of self-management strategies yet knowledge is lacking about support of patients' own resources in CHF. AimTo explore the phenomena of patient participation and non-participation as shown in patient visits to a nurse-led clinic for CHF and as experienced by the patients and nurses. MethodsData triangulation of field notes from participatory observations and texts from narrative interviews with the patients and assigned nurse specialists. Data were analyzed according to the phenomenological hermeneutic tradition. FindingsPatients' experience of participation and non-participation was interpreted as “Being responsible and accepting responsibility” and “Lacking an equal relationship while being controlled”, respectively. Nurses experienced patient participation as “Getting information and security to act” and patient non-participation as “Not accepting”. ConclusionConflicting values of patients and nurses, which were interpreted with respect to participation and non-participation, presumably might influence patient information and education negatively. The issue of participation should be raised as a means of attaining concordance and to facilitate patient participation with education specifically tailored to the individual patient's needs.
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