| 1. |
- Dalheim Englund, Ann-Charlotte, et al.
(författare)
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Having a child with asthma : quality of life for Swedish parents
- 2004
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 13:3, s. 386-395
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Asthma is the most common chronic childhood disease. Childhood asthma contributes significantly to morbidity among children and has a significant impact on the quality of life (QoL) and daily routines of both the children and their parents. AIM AND OBJECTIVE: The purpose of this study was to investigate how Swedish parents of children with asthma experience their QoL, and to investigate whether there were differences concerning QoL between parents within the same family. The purpose was also to investigate possible connections between their QoL and background variables. METHOD: A total of 371 parents of children with asthma (57% mothers and 43% fathers) participated in the study. The Paediatric Asthma Caregiver's Quality Of Life Questionnaire (PACQLQ) was used to measure the parents' QoL, i.e. how the child's asthma interferes with the parents' normal activities and how it has made them feel. RESULTS: The findings show that most parents of children with asthma evaluated their QoL as close to the positive end of the scale, and there was close agreement in the scoring between parents within the same family. Significant associations were found between parents' lower QoL outcome and living in the North of Sweden. There were also significant associations between fathers' lower QoL outcome and having a child younger than 13 years of age and mothers' lower QoL outcome and having a child with severe asthma. Although the result shows that a child's asthma did not influence the parents' QoL to a greater degree, it is still important for healthcare workers to help these parents to sustain and improve their well-being. CONCLUSIONS: The fact that they just evaluated their QoL during the preceding week only, and did so at the time when their children were being treated with asthma medication, might have influenced the results in a positive direction.
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| 2. |
- Efraimsson, Eva, et al.
(författare)
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Expressions of power and powerlessness in discharge planning: a case study of an older woman on her way home
- 2003
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 12:5, s. 717-716
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this case study was to illuminate and describe the phenomenon of power as it appeared in a discharge planning conference. The patient was an older woman who needed long-term care as a result of stroke and heart failure. Data comprised transcriptions of a video-recorded discharge planning conference and two audio-recorded interviews focusing on the patient's experience of the discharge planning conference. The findings reveal that the content of the discharge planning conference focused on the patient's medical state and routine administrative protocols. Analysis of the participants' activities, strategies and attitudes during the conference indicate that the professional carers dominated the conversation. Analysis further reveals that the patient experienced a feeling of powerlessness and of being treated as an object. The findings are interpreted and discussed based on the concepts of 'institutional frame' and 'client's frame', derived from Agar's theory of institutional discourse.
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| 3. |
- Efraimsson, Eva, et al.
(författare)
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How to get one's voice heard : the problems of the discharge planning conference.
- 2006
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 53:6, s. 646-655
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: This paper reports a study describing how patients, relatives and healthcare professionals dealt with the variety of problems and responsibilities that occur in discharge planning conferences and especially how they managed to do this given the institutional frame that surrounded the meeting. BACKGROUND: In Sweden, the aim of a discharge planning conference is to co-ordinate social and healthcare resources as patients are discharged from hospitals. Patients, relatives and hospital staff, along with healthcare professionals responsible for outpatient care, assemble to achieve an individual care plan. One of the explicit principles informing the discharge planning conference is to increase patients' influence on decision-making. However, research points at shortcomings in this respect. METHOD: A discourse analysis was conducted using transcriptions of eight video-recorded discharge planning conferences. The selected patients were eight older women expected to be discharged from hospital. Other participants were staff nurses, social workers and occasionally relatives, an occupational therapist, district nurse or home care aide. FINDINGS: Participants adopted different roles as persons/patients, relative/next of kin and healthcare professionals/institutional representatives during the discharge planning conference, which they simultaneously struggled to act upon. The findings are presented under the categories 'Clashing roles and perspectives' and 'Facing the institutional frame'. CONCLUSIONS: The performance of the discharge planning conference in its present form interferes with a caring perspective that protects patients' integrity and gives prominence to their life worlds. Moreover, it does not satisfy patients' and relatives' right to expect proceedings that enhance their possibility to express their personal wishes in a dignified manner.
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| 4. |
- Efraimsson, Eva, 1955-
(författare)
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Vårdplaneringsmötet. : En studie av det institutionella samtalet mellan äldre kvinnor, närstående och vårdare
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to describe how elderly women’s encounters with an institutionalised world of health care manifest itself in a discharge planning conference (DPC). The thesis is based on eight video recorded DPCs and follow-up interviews with the women who took part in the conferences. The result of study I, a case study, showed that the woman’s experience of taking part in the DPC was characterised as a feeling of powerlessness. The women’s possibility to have influence on the care planning was small (Study II). Study III revealed that the participants adopted or were assigned to different roles during the DPC. As these roles collided dilemmatic situations occurred. Simultaneously the women and family members struggled to manage the institutional frame that surrounded the meeting by trying to find room within it or by challenging it. Study IV revealed that the women found themselves to be in a vulnerable situation. Their body had failed them, their future was insecure and they felt unprepared as they took part in the DPC. They felt as if they were being affiliated with the other participants in a joint project, as if they were standing outside the event or as if they were in focus for the conversation which. The last was a double edged experience: getting confirmative attention but also being exposed as dependent. Four themes characterise the care that was jointly constructed by all participants during the DPC. These themes are “Care as spirit of community and confirmation”, ”Care as alienation”, ”The incomprehensible care” and “The inflexible and betraitful care”.The result gives rise to questions about the relevance of DPCs in their present shape. Further research and developmental projects requested to achieve dicharge planning conferences that are corresponding better to official caring ideals and the patients needs.
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| 5. |
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| 6. |
- Hajdarevic, Senada, et al.
(författare)
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Kända och okända riskfaktorer för cancer bland svenskar
- 2013
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Ingår i: Onkologi i Sverige. - Gustavsberg : Pharma Industry Publishing AB. - 1653-1582. ; :5, s. 36-43
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Sammanfattningsvis identifierades lägre medvetenhet om riskfaktorer för cancer främst bland dem med lägre utbildning och bland dem i åldersgruppen 50+. Skillnader identifierades även mellan män och kvinnor. Hittills genomförda insatser med syfte att öka kunskapen om PV verkar otillräckliga(20) och behöver framförallt riktas mot män och grupper med lägre utbildning vilket också bekräftas av andra studier.Vissa livsstilsrelaterade riskfaktorer för cancer som alkoholkonsumtion, att äta rött- och förbehandlat kött, lågt intag av frukt och grönsaker, och låg fysisk aktivitet var mindre kända hos allmänheten. Eftersom detta är faktorer som den enskilda individen skulle kunna påverka utgör de goda kandidater för preventionskampanjer.En sammanställning av cancerpreventionsåtgärder i Sverige och deras effekt saknas och vi efterlyser en sådan. Informationskampanjer höjer oftast den generella kunskapen i samhället men effekten kan vara kortvarig och den självuppfattade risken att drabbas av cancer kan förbli låg.Våra resultat kan ge en vägledning för att bättre anpassa och rikta information för att nå lika riskgrupper och höja medvetenhet om cancer.
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| 7. |
- Lindqvist, Olav, et al.
(författare)
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Complexity in Non-Pharmacological Caregiving Activities at the End of Life : An International Qualitative Study
- 2012
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Ingår i: PLoS Medicine. - San Francisco : Public Library of Science. - 1549-1277 .- 1549-1676. ; 9:2, s. e1001173-
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Tidskriftsartikel (refereegranskat)abstract
- Background: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. Methods and Findings: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. Conclusions: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
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| 8. |
- Lindqvist, Olav, et al.
(författare)
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Four essential drugs needed for quality care of the dying : a Delphi-study based international expert consensus opinion
- 2013
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:1, s. 38-43
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Purpose: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. Material and methods: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. Results: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. Conclusion: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.
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| 9. |
- Lundquist, Gunilla, et al.
(författare)
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Information of imminent death or not : does it make a difference?
- 2011
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Ingår i: Journal of Clinical Oncology. - Orlando, FL : Grune & Stratton. - 0732-183X .- 1527-7755. ; 29:29, s. 3927-3931
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This study examines whether end-of-life care for patients with cancer who were informed about imminent death differs from care for those patients with cancer who were not informed. Patients and Methods: This study included all cancer deaths between 2006 and 2008 for which the patient did not lose his or her decision-making capacities until hours or days before death (N=13,818). These patients were taken from a national quality register for end-of-life care. The majority of the patients—91% (n=12,609) —had been given information about imminent death; 9% (n=1,209) had not been informed. Because of the difference in sample size, a matching procedure was performed to minimize bias. This resulted in a comparison of 1,191 informed and 1,191 uniformed patients. Nonparametric methods were used for statistical analyses. Results: Informed patients significantly more often had parenteral drugs prescribed as needed (ie, PRN), had his or her family informed, died in his or her preferred place, and had family who were offered bereavement support. There was no difference in symptom control (ie, pain, anxiety, confusion, nausea, and respiratory tract secretions) between the groups. Conclusion: Providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.
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| 10. |
- Meidell, Liv, et al.
(författare)
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Acupuncture as an optional treatment for hospice patients with xerostomia : an intervention study
- 2009
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Ingår i: International Journal of Palliative Nursing. - 1357-6321 .- 2052-286X. ; 15:1, s. 12-20
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Tidskriftsartikel (refereegranskat)abstract
- More than 70% of seriously ill patients with cancer suffer from xerostomia and the associated problems of swallowing, chewing and speaking. This study aims to investigate whether treatment with acupuncture is a viable option for hospice patients with xerostomia. During a 2-year period, 117 patients were assessed for xerostomia. Eighty-two patients were found to have moderate xerostomia. Sixty-seven fulfilled the criteria for inclusion. Of these, 14 were included but only eight completed the study. Ten acupuncture treatments were given during a 5-week period. The effect of acupuncture was measured using a visual analogue scale, and by measuring the saliva production before and after the series of treatment. The results show that all the patients experienced alleviation of dryness of the mouth and the associated symptoms, and thus benefited from the acupuncture treatment. However, conducting a 5-week acupuncture intervention study is not feasible at an inpatient hospice due to the patients being too close to death.
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| 11. |
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| 12. |
- Näppä, Ulla, et al.
(författare)
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Palliative chemotherapy during the last month of life
- 2011
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Ingår i: Annals of Oncology. - : Oxford University Press. - 0923-7534 .- 1569-8041. ; 22:11, s. 2375-2380
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: This study analyses the potential discriminative characteristics for patients with incurable cancer who received palliative chemotherapy during their last month of life.PATIENTS AND METHODS: The study includes all patients with epithelial cancer treated with palliative chemotherapy who died in 2008 in northern Sweden. Demographic parameters and care utilization data were registered. Data were analyzed using nonparametric methods.RESULTS: Of 374 included patients, 87 (23%) received chemotherapy during the last month of life. These patients had a significantly shorter survival time from first palliative treatment to death, were admitted more frequently to hospital, more often lacked a documented decision to cease treatment, and died less frequently at home.CONCLUSIONS: The results indicate covariations between palliative chemotherapy treatments in the last month of life and unfavorable patient outcomes. As almost one of four patients with incurable cancer received their last round of palliative chemotherapy <31 days before death, there is a potential for improved routines.
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| 13. |
- Pahor, Majda, et al.
(författare)
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How does culture show? : a case study of an international and interprofessional course in palliative care
- 2009
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Ingår i: Journal of Interprofessional Care. - : Informa UK Limited. - 1356-1820 .- 1469-9567. ; 23:5, s. 474-485
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Tidskriftsartikel (refereegranskat)abstract
- Research shows slow improvement of the care of dying persons and their significant others. One of the reasons for that is the lack of palliative care education as an integral part of health professionals' undergraduate education. The paper discusses an attempt to develop innovative forms of palliative care education: an international, interprofessional and IT-supported undergraduate course for Swedish and Slovenian students of nursing, medicine, occupational therapy, physiotherapy, psychology and social work, which has been developed jointly by the two authors. One of the aims of the course has been to address differences in professional and national cultures relevant to quality in palliative care. The development and pilot implementation phases of the course were analysed qualitatively, using evaluation materials from students and teachers and from an external evaluation study. The results show that the interprofessional approach in the course enabled students to get to know other professions, as well as enabling them to work together as a team and resolve conflicts. Cultural differences between Sweden and Slovenia were not very pronounced, yet they came to the fore regarding teamwork and relationships between professions, as well as in respect of the “right thing” to do in relation to patient' problems.
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| 14. |
- Rasmussen, Birgit Holritz, et al.
(författare)
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Experiences of living with a deteriorating body in late palliative phases of cancer
- 2010
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Ingår i: Current opinion in supportive and palliative care. - 1751-4266. ; 4:3, s. 153-157
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE OF REVIEW: The trajectory of living with incurable cancer is characterized by increasing deterioration of the person's body. The aim of this review is to gain insight into the expert knowledge people have about their own lived experiences of bodily deterioration and symptoms in late palliative phases of cancer, and suggest a framework for understanding and studying these experiences. RECENT FINDINGS: When assessing the presence, severity and distress of symptoms and problems experienced by patients, it is important to carefully consider choice of instruments, which by nature, tend to target distinct problems, and expand assessment to include narrative approaches. Deterioration of the body and symptom distress can have dire consequences for the individuals, as these threaten the intactness of the person, may lead to desire to end one's life, can act as determinant of place of death, and dominate the sick person's existence. SUMMARY: Understanding the meaning bodily deterioration and symptoms have for patients is intrinsic for optimization of supportive interventions. We suggest that improved integration of knowledge from logical scientific and narrative approaches in research aiming to generate empirical and/or theoretical knowledge, and cross-fertilization of research from closely related areas can contribute to improving care for this vulnerable group of patients.
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| 15. |
- Rydström, Ingela, et al.
(författare)
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Asthma--quality of life for Swedish children.
- 2005
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 14:6, s. 739-749
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: The purpose of this study was to describe how Swedish children with asthma experience their QoL and to search for possible associations between their experience of QoL and some determinants. BACKGROUND: Asthma is a chronic disorder that can restrict a child's life, physically, emotionally, socially and spiritually, and this has an impact on a child's quality of life (QoL). METHODS: Two hundred and twenty-six children with asthma (37% girls and 63% boys) and 371 parents of these children participated in the study. The Paediatric Asthma Quality Of Life Questionnaire (PAQLQ) was used to measure the children's QoL. This questionnaire reveals how the children's asthma interferes with their normal activities, their symptoms and how this interference has made them feel. RESULTS: The findings show that most children with asthma estimated their QoL towards the positive end of the scale. The children reported more impairment in the domain of activities than in emotions and symptoms. The most commonly restricted activity was the children's ability to run. Significant associations were found between a higher QoL outcome and being a boy, as well as living in the south of Sweden. A higher QoL was also found in children with mothers older than 40 years of age and in children with cohabiting parents. It was also associated with their fathers' QoL in a positive direction. CONCLUSIONS: It is important that children with asthma will maintain a high QoL. In this study the children were being treated with asthma medication when they evaluated their QoL. Perhaps this fact might have influenced the results in a positive direction. RELEVANCE TO CLINICAL PRACTICE: The findings of our study underline the importance of accurate nursing assessment including background variables of the children. Nurses also have to be aware that some of the children in the study have a low QoL and these children must not be forgotten. In addition, as caring tends to focus on the patients' limitations, another important issue for nurses is to try to discover those aspects in a child's daily life that contribute to a high QoL in order to improve and maintain the child's wellbeing.
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| 16. |
- Öresland, Stina, 1952-
(författare)
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Nurses go visiting : ethics and gender in home-based nursing care
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to explore how nursing is constructed in home-based nursing care from the viewpoint of patients and nurses who are receiving or giving care. Since nursing both constructs and is in turn constructed by the context in which it serves, language plays a central part in those constructions and in this thesis. The thesis has been guided by social constructionism, meaning that the positions the patients and the nurses inhabits have been considered as social phenomenon constructed in discursive processes. There are two ideas that guided this thesis. One idea was that home-based nursing care promotes the association of caring abilities in relation to nursing, women and the private sphere. Another idea was that the place where the care was carried out has ethical implications. Data was collected from interviews with 10 home-based nurses (study I) working in community in the western part of Sweden and 10 patients cared for in their home by these nurses (study II). Nurses and patients were interviewed about their experiences of giving respectively receiving home-based nursing care. The interviews were transcribed verbatim and analyzed with a discourse analytic method in study I and II. The findings in study I show that the nurses described their subject positions as "guests" and "professionals" and that they have to make a choice between these positions, as it is impossible to perform both positions at the same time. Dependent on the situation, both an ethics of care and an ethics of justice were applied by the nurses, that is, to perform according to the subject positions of "guest" or "professional." In study II, the patients describe their own subject position as "safeguard" and the nurses‟ positions as "substitutes". These subject positions provided the opportunities, and the obstacles, for the patients‟ possibilities to receive care in their home which included which kind of strategies, habits and activities the patients described and what tasks and how they considered or expected the nurses to perform. These findings are discussed within a theoretical framework, i.e. a gendered dichotomy of the private spheres versus the public spheres. Inherent in this framework is a discussion of the findings related to the habits that are essential in the nurses‟ and the patients‟ constructions of subject positions. In study III, metaphors used by home-based nurses‟ were explored as a means to discover values and norms held by nurses working in home-based nursing care. Ten interviews with nurses working in home-based nursing care (the same interviews as in study I) were analyzed and interpreted with a metaphor analytic method. In the analysis metaphoric linguistic expressions (MLE) were explored and patterns of MLEs formed two entailments. After exploring MLEs and entailments on an explicit surface level the analysis went to a broader underlying dimension of conceptual metaphors identifying the overall metaphor: "Home-based nursing care is an endless journey". The metaphor "Home-based nursing care is an endless journey" exposed home-based nursing care in constant motion, thereby requiring nurses to adjust to circumstances. This adjustment required ethical maturity based on experience, knowledge, and creativity. The study III focuses on the importance of further developing reflections over experiences related to everyday ethical issues. In study IV, the findings from study I were the starting point for a philosophical exploration of the concept "guest" and its relation to other adjacent concepts such as hosts and hospitality. The question to be answered was as follows: In what ways can home-based nurses‟ description of being "guests" in patients‟ home be understood? The exploration was based on Derrida‟s philosophy of unconditional and conditional hospitality, Levinas‟ philosophy of "face" and "the Other" and Arendt‟s philosophy of "go visiting". The findings indicated that the concept "guest" was not appropriate for the nurses to use when describing their position in home-based nursing care, since the concept was problematic for the content and the complexity of home-based nursing care. The findings also showed that exposing concepts as binaries is fruitful since they show relationship between concepts. Just illuminating the concept "guest" did not reveal the power relationship between the "guest" and the "host" and their relationship to hospitality. The distinction between diverse ethical perspectives could be seen as problematic or as an opportunity. According to this study, the nurses used a plurality of different ethical ideas, such as an ethics of care, an ethics of justice, an ethics of virtue and an "everyday ethics." A possible interpretation could be that this was a sign of a difficulty to maintain distinction between ethical theories in clinical practice. Ethical issues in the private sphere are less commonly explored compared to ethical issues in the public sphere, for example in hospital care. As showed in this thesis, the distinction between the private and the public spheres was problematic. It does not describe two spatially separate spheres, but rather it describes functionally dependent activities, interests and relations, such as diverse areas of ethical ideas and "feminine" and "masculine" positions. Home-based nursing care is a complex area and discourse analysis of the relation between home-based nursing care, subject positions, ethics and gender is more or less lacking. Exploring home-based nursing care outgoing from discourse analytic perspectives and methods is rewarding for nurses‟ practice, education and research as it opens up new perspectives of home-based nursing care.
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