| 1. |
- Årestedt, Kristofer, 1968-, et al.
(författare)
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Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
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| 2. |
- Lövgren, Malin, et al.
(författare)
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Clock time and embodied time experienced by patients with inoperable lung cancer
- 2010
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Ingår i: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 14, s. S45-S45
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Tidskriftsartikel (refereegranskat)abstract
- In this study, we explore how patients with inoperable lung cancer (LC) discuss their experiences of time, based on content analysis of open interviews with 35 patients 1 year after diagnosis, using Davies' distinction between "clock time" and "embodied time" as sensitizing concepts. Two interrelated themes were derived: (1) aspects related to the healthcare system, with 3 subthemes: waiting times in the healthcare system, limited time for patient-professional contact, and limited time for coordination of services, and (2) existential aspects, with subthemes: the future with LC and managing an uncertain and finite life with LC. Time could be experienced as problematic for these patients, when limited or lacking or through long periods of waiting, especially when these periods occurred without adequate preparation or information. This contributed to exacerbation of these patients' existing sense of uncertainty, their perception of care as impersonal and insecure, and their need to remain alert and act on their own behalf. Awareness of the seriousness of their disease and the prospect of a limited lifetime was described as increasing uncertainty about dying and fear of certain death. People also described efforts to constructively deal with their situation by reprioritizing their remaining time, having increased appreciation of some aspects of daily life, and living consciously in the present. This analysis suggests a collision between clock time, which steers the healthcare system, and embodied time, as experienced by individuals. Greater attention to psychosocial needs is suggested as one means of positively affecting patients' experiences of time and uncertainty.
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| 3. |
- Öresland, Stina, et al.
(författare)
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Nurses as guests or professionals in home health care
- 2008
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Ingår i: Nursing Ethics. - : SAGE Publications. - 0969-7330 .- 1477-0989. ; 15:3, s. 371-383
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to explore and interpret the diverse subject of positions, or roles, that nurses construct when caring for patients in their own home. Ten interviews were analysed and interpreted using discourse analysis. The findings show that these nurses working in home care constructed two positions: 'guest' and 'professional'. They had to make a choice between these positions because it was impossible to be both at the same time. An ethics of care and an ethics of justice were present in these positions, both of which create diverse ethical appeals, that is, implicit demands to perform according to a guest or to a professional norm.
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| 4. |
- Mamhidir, Anna-Greta, et al.
(författare)
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Weight increase in patients with dementia, and alteration in meal routines and meal environment after integrity promoting care.
- 2007
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 16:5, s. 987-96
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Tidskriftsartikel (refereegranskat)abstract
- Aims. To follow weight changes in patients with moderate and severe dementia and analyse how these changes related to biological and psychological parameters after staff education and support in integrity promoting care. A further aim was to describe meal environment and routines relative to the intervention.Background. Weight loss in patients with dementia and in particular Alzheimer's disease is common. The aetiology appears multifactorial with the meal environment and a decreased independence while eating among the factors.Method. Over a three-month intervention period, an integrity-promoting care training programme was conducted with the staff of a long-term ward. Alzheimer's disease patients, 18 from an intervention ward and 15 from a control ward were included and possible effects were evaluated. Weighing was conducted at the start and after completion of the intervention. Weight changes were analysed in relation to psychological and biochemical parameters. In addition, the staff wrote diaries about, for example changes made in the environment and in their work.Results. The most prominent difference observed was weight increases in 13 of 18 patients compared with two of 15 patients in the control ward. No weight changes were related to the type of dementia. The individual weight changes correlated significantly to changes in the intellectual functions. Relationships between weight change, increased motor function and increased appetite were non-significant. There was no significant relationship between weight changes and changes in biochemical parameters. According to the staff, increased contact with the patients and a more pleasant atmosphere resulted when the meal environment and routines were changed.Relevance to clinical practice. Weight gain in patients with moderate and severe dementia was achieved by adjusting the meal environment to the individual's needs. Staff education was profitable, as increased competence seemed to promote individually adapted feeding situations. Ensuring good meal situations need to be given high priority.
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| 5. |
- Mazaheri, Monir, 1977-, et al.
(författare)
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Clear conscience grounded in relations : Expressions of Persian-speaking nurses in Sweden
- 2017
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Ingår i: Nursing ethics. - : SAGE Publications. - 0969-7330 .- 1477-0989. ; 3:1, s. 349-361
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Tidskriftsartikel (refereegranskat)abstract
- Background: Conscience is an important concept in ethics, having various meanings in different cultures. Because a growing number of healthcare professionals are of immigrant background, particularly within the care of older people, demanding multiple ethical positions, it is important to explore the meaning of conscience among care providers within different cultural contexts.Research objective: The study aimed to illuminate the meaning of conscience by enrolled nurses with an Iranian background working in residential care for Persian-speaking people with dementia.Research design: A phenomenological hermeneutical method guided the study.Participants and research context: A total of 10 enrolled nurses with Iranian background, aged 33–46 years, participated in the study. All worked full time in residential care settings for Persian-speaking people with dementia in a large city, in Sweden.Ethical considerations: The study was approved by the Regional Ethical Review Board for ethical vetting of research involving humans. Participants were given verbal and written study information and assured that their participation was voluntary and confidential.Findings: Three themes were constructed including perception of conscience, clear conscience grounded in relations and striving to keep a clear conscience. The conscience was perceived as an inner guide grounded in feelings, which is dynamic and subject to changes throughout life. Having a clear conscience meant being able to form a bond with others, to respect them and to get their confirmation that one does well. To have a clear conscience demanded listening to the voice of the conscience. The enrolled nurses strived to keep their conscience clear by being generous in helping others, accomplishing daily tasks well and behaving nicely in the hope of being treated the same way one day.Conclusion: Cultural frameworks and the context of practice needed to be considered in interpreting the meaning of conscience and clear conscience.
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| 6. |
- Thulin, Helena, et al.
(författare)
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Defecation disturbances after cystectomy for urinary bladder cancer
- 2011
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Ingår i: BJU International. - : Blackwell Publishing Ltd. - 1464-4096 .- 1464-410X. ; 108:2, s. 196-203
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Tidskriftsartikel (refereegranskat)abstract
- What’s known on the subject? and What does the study add?Functional gastrointestinal symptoms and problems are common after radical cystectomy with urinary diversion. This study adds new important epidemiological data on this group of symptoms. OBJECTIVE: To describe and compare long-term defecation disturbances in patients who had undergone a cystectomy due to urinary bladder cancer with non-continent urostomies, continent reservoirs and orthotopic neobladder urinary diversions. PATIENTS AND METHODS: During their follow-up we attempted to contact all men and women aged 30–80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. During a qualitative phase we identified defecation disturbances as a distressful symptom and included this item in a study-specific questionnaire together with free-hand comments. The patients completed the questionnaire at home. Outcome variables were dichotomized and the results are presented as relative risks with 95% confidence interval. RESULTS: The questionnaire was returned from 452 (92%) of 491 identified patients. Up to 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). A sense of decreased straining capacity was reported by 20% of the men and women with non-continent urostomy and 14% and 8% of those with continent reservoirs and orthotopic neobladders, respectively. CONCLUSIONS: Of the cystectomized individuals 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). Those wanting to improve the situation for bladder cancer survivors may consider communicating before surgery the possibility of stool-emptying problems, and asking about them after surgery.
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| 7. |
- Augutis, Marika, et al.
(författare)
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Psychosocial aspects of traumatic spinal cord injury with onset during adolescence : A qualitative study
- 2007
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Ingår i: Journal of Spinal Cord Medicine (JSCM). - : Informa UK Limited. - 1079-0268 .- 2045-7723. ; 30:Suppl1, s. 55-64
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND/OBJECTIVE: Spinal cord injury (SCI) occurring during adolescence poses additional challenges because of the concurrent age-specific bio-psychosocial development. Full understanding of the psychosocial dimensions of rehabilitation requires exploration of the patient perspective. The objective of this study was to focus on psychosocial factors from the patient perspective in persons who had previously sustained a SCI during early and mid-adolescence (11-15 years of age).METHODS: Twenty-four of the 28 persons who had sustained a SCI in Sweden from 1985 to 1996 participated in the study. Semistructured interviews were made an average of 10 years after injury. Narratives were analyzed qualitatively according to content analysis.RESULTS: Parents and peers were found to have formed a crucial network. Parents frequently acted as advocates in interactions with health care providers, as supporters, and as containers of sorrow, frustration, and anger. Peers acted as promoters of activity and identity development. However, health care providers were perceived as not making sufficient use of this network.CONCLUSIONS: Rehabilitation professionals might be encouraged to increase their knowledge of adolescence medicine to better meet the specific needs and demands of persons in this age group. It is further suggested that parents and peers be considered important partners in the joint rehabilitation effort.
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| 8. |
- Öresland, Stina, et al.
(författare)
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Patients as 'safeguard' and nurses as 'substitute' in home health care
- 2009
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Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989. ; 16:2, s. 219-230
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Tidskriftsartikel (refereegranskat)abstract
- One aim of this study was to explore the role, or subject position, patients take in the care they receive from nurses in their own home. Another was to examine the subject position that patients say the nurses take when giving care to them in their own home. Ten interviews were analysed and interpreted according to a discourse analytical method. The findings show that patients constructed their subject position as 'safeguard', and the nurses' subject position as 'substitute' for themselves. These subject positions provided the opportunities, and the obstacles, for the patients' possibilities to receive care in their home. The subject positions described have ethical repercussions and illuminate that the patients put great demands on tailored care.
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| 9. |
- Mazaheri, Monir, 1977-, et al.
(författare)
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Meanings of troubled conscience and how to deal with it : expressions of Persian-speaking enrolled nurses in Sweden.
- 2018
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 32:1, s. 380-388
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: A feature of the healthcare system in Sweden, particularly in the care of older people, is its cultural diversity in terms of having considerable numbers of both caregivers and care recipients with an immigrant background. Considering the influence of culture in ethical decision-making processes, the idea of conscience and the adverse effects of a troubled conscience, it is important to study the concepts of conscience and troubled conscience in culturally diverse populations. There is no published study regarding troubled conscience among immigrant populations that includes enrolled nurses.AIM: To illuminate the meanings of troubled conscience and how to deal with it among enrolled nurses with Iranian backgrounds working in Swedish residential care for Persian-speaking people with dementia who have emigrated from Iran.METHOD: The study was conducted with a phenomenological hermeneutic design. Ten enrolled nurses with an Iranian background, with at least one year's experience of taking care of older people with dementia, were interviewed. The study was reviewed by the Regional Ethical Review Board for ethical vetting of research involving humans. Appropriate measures were taken to ensure confidentiality and voluntary participation.RESULTS: The meanings of having a troubled conscience for the participants comprise not being a good person, including being an uncaring person, not acting according to one's values and living in a state of unease. Dealing with a troubled conscience involves trying to compensate for the harm one has caused and trying to prevent similar situations by being a responsible caregiver.CONCLUSIONS: The enrolled nurses understood themselves as caring people and not only caregivers. They knew that they should hear their conscience and respond to it by trying to be a caring person and acting according to their values. The findings should be interpreted in the given specific context.
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| 10. |
- Thulin, Helena, et al.
(författare)
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Hygiene and urinary tract infections after cystectomy in 452 Swedish survivors of bladder cancer.
- 2009
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Ingår i: BJU International. - 1464-4096 .- 1464-410X.
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES To determine whether or not an improved hygiene can lessen the incidence of symptomatic urinary tract infections (UTIs) in patients treated by cystectomy for urinary bladder cancer. PATIENTS AND METHODS We attempted to contact during their follow-up all men and women aged 30-80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. During a qualitative phase we identified hygienic measures and included them in a study-specific questionnaire. The patients completed the questionnaire at home. Outcome variables were dichotomized and the results presented as relative risks (RR) with 95% confidence interval. RESULTS We received the questionnaire from 452 (92%) of 491 identified patients. The proportion of patients who had a symptomatic UTI in the previous year was 22% for orthotopic neobladder and cutaneous continent reservoir, and 23% for non-continent urostomy diversion. The RR for a UTI was 1.1 (0.5-2.5) for 'never washing hands' before handling with catheters or ostomy material. Patients with diabetes mellitus had a RR of 2.1 (1.4-3.2) for having a symptomatic UTI. CONCLUSIONS We could not confirm lack of hygiene measures as a cause of UTI for men and women who had a cystectomy with urinary diversion. Patients with diabetes mellitus have a greater risk of contracting a UTI.
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