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1.
  • Hudson, Lawrence N, et al. (författare)
  • The database of the PREDICTS (Projecting Responses of Ecological Diversity In Changing Terrestrial Systems) project
  • 2017
  • Ingår i: Ecology and Evolution. - : John Wiley & Sons. - 2045-7758. ; 7:1, s. 145-188
  • Tidskriftsartikel (refereegranskat)abstract
    • The PREDICTS project-Projecting Responses of Ecological Diversity In Changing Terrestrial Systems (www.predicts.org.uk)-has collated from published studies a large, reasonably representative database of comparable samples of biodiversity from multiple sites that differ in the nature or intensity of human impacts relating to land use. We have used this evidence base to develop global and regional statistical models of how local biodiversity responds to these measures. We describe and make freely available this 2016 release of the database, containing more than 3.2 million records sampled at over 26,000 locations and representing over 47,000 species. We outline how the database can help in answering a range of questions in ecology and conservation biology. To our knowledge, this is the largest and most geographically and taxonomically representative database of spatial comparisons of biodiversity that has been collated to date; it will be useful to researchers and international efforts wishing to model and understand the global status of biodiversity.
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3.
  • Ahlström, Gerd, et al. (författare)
  • Similarities and differences between China and Sweden regarding the core features of palliative care for people aged 60 or older : a systematic scoping review
  • 2022
  • Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 21
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Despite the increasing longevity of the world's population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden.METHODS: The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007-2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains.RESULTS: Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions.CONCLUSIONS: Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons' need for palliative care and should take account of issues concerning research ethics, ethnicity and culture.REGISTERED IN PROSPERO: CRD42020078685 , available from.
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4.
  • Beck, Ingela, et al. (författare)
  • Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care : A qualitative focus group study
  • 2023
  • Ingår i: Nursing Open. - : Wiley-Blackwell Publishing Ltd. - 2054-1058. ; 10:12, s. 7639-7649
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM : To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care. DESIGN : This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting. METHODS : Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis. RESULTS : Using IPOS for communication with the patient gave an opportunity to understand the patient's care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.
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5.
  • Bernhardson, Britt-Marie, et al. (författare)
  • Sensations, symptoms, and then what? : Early bodily experiences prior to diagnosis of lung cancer
  • 2021
  • Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:3
  • Tidskriftsartikel (refereegranskat)abstract
    • Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.
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6.
  • Birgisdóttir, Dröfn, et al. (författare)
  • A novel care guide for personalised palliative care – a national initiative for improved quality of care
  • 2021
  • Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20, s. 1-12
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundEven when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide.MethodsThe Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings.ResultsAfter extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included.ConclusionsBased on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.
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7.
  • Dahm, Christina C., et al. (författare)
  • Fatty acid patterns and risk of prostate cancer in a case-control study nested within the European Prospective Investigation into Cancer and Nutrition
  • 2012
  • Ingår i: American Journal of Clinical Nutrition. - : Elsevier BV. - 0002-9165 .- 1938-3207. ; 96:6, s. 1354-1361
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Fatty acids in blood may be related to the risk of prostate cancer, but epidemiologic evidence is inconsistent. Blood fatty acids are correlated through shared food sources and common endogenous desaturation and elongation pathways. Studies of individual fatty acids cannot take this into account, but pattern analysis can. Treelet transform (TT) is a novel method that uses data correlation structures to derive sparse factors that explain variation. Objective: The objective was to gain further insight in the association between plasma fatty acids and risk of prostate cancer by applying TT to take data correlations into account. Design: We reanalyzed previously published data from a case-control study of prostate cancer nested within the European Prospective Investigation into Cancer and Nutrition (EPIC) cohort. TT was used to derive factors explaining the variation in 26 plasma phospholipid fatty acids of 962 incident prostate cancer cases matched to 1061 controls. Multiple imputation was used to deal with missing data in covariates. ORs of prostate cancer according to factor scores were determined by using multivariable conditional logistic regression. Results: Four simple factors explained 38% of the variation in plasma fatty acids. A high score on a factor reflecting a long-chain n-3 PUFA pattern was associated with greater risk of prostate cancer (OR for highest compared with lowest quintile: 1.36; 95% CI: 0.99, 1.86; P-trend = 0.041). Conclusion: Pattern analyses using TT groupings of correlated fatty acids indicate that intake or metabolism of long-chain n-3 PUFAs may be relevant to prostate cancer etiology. Am J Clin Nutr 2012;96:1354-61.
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8.
  • Dalhammar, Karin, et al. (författare)
  • Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life
  • 2023
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889. ; 63
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: Getting an incurable oesophageal or gastric cancer diagnosis is a major stressful life event associated with severe physical, psychosocial and existential challenges. To provide timely and efficient support, based on patients' experiences, the aim of the study was to explore how patients newly diagnosed with incurable oesophageal and gastric cancer manage everyday life. Method: Semi-structured interviews were conducted with 12 patients 1–3 months after being diagnosed with incurable oesophageal or gastric cancer. Four participants were interviewed twice, which resulted in 16 interviews. Data were analysed with qualitative content analysis. Results: An overall theme, “Striving towards normality in an unpredictable situation”, with three related themes – “Trying to comprehend the disease”, “Dealing with the consequences of illness” and “Re-evaluating what is important in everyday life” – and seven sub-themes were identified. The participants described an unexpected and unpredictable situation, in which they strived to maintain their normal life. Amidst struggling to manage problems related to eating, fatigue and an incurable diagnosis the participants talked about the importance of focusing on the positive and normal aspects of life. Conclusions: The findings in this study point to the importance of supporting patients’ confidence and skills, particularly with regard to managing eating, so that they can hold on to their normal life as much as possible. The findings further point to the possible benefit of integrating an early palliative care approach and could provide guidance for nurses and other professionals on how to support patients post diagnosis.
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9.
  • Dalhammar, Karin, et al. (författare)
  • Symptoms, problems and quality of life in patients newly diagnosed with oesophageal and gastric cancer - a comparative study of treatment strategy
  • 2022
  • Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 22, s. 1-14
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Patients with oesophageal and gastric cancer have a low likelihood of being cured and suffer from a broad spectrum of symptoms and problems that negatively affect their quality-of-life (QOL). Although the majority (67-75%) of patients at the time of diagnosis suffer from an incurable disease, research has primarily focused on the pre- and postoperative phase among patients treated with curative intent, with little attention to symptoms and problems in the diagnostic phase, especially in those who cannot be offered a cure.METHODS: In this cross-sectional study 158 patients newly diagnosed with oesophageal and gastric cancer visiting the surgical outpatient department for a preplanned care visit were included consecutively during 2018-2020. The validated instruments QLQ-C30 and QLQ-OG25, developed by the European Organization for Research and Treatment of Cancer (EORTC), and selected items from the Integrated Patient Outcome Scale (IPOS) were used to assess QOL, symptoms and problems. Differences between patients with a curative and a palliative treatment strategy were analysed using t-test and Mann-Whitney U test. The QLQ-C30 and QLQ-OG25 scores were compared to published reference data on the general Swedish population.RESULTS: Among all, the QOL was markedly lower, compared with general Swedish population (mean ± SD, 55.9 ± 24.7 vs 76.4 ± 22.8, p < 0.001). Compared to general population, the patients had significant impairment in all QOL aspects, particularly for role and emotional functioning and for symptoms such as eating-related problems, fatigue, insomnia and dyspnea. Majority of patients also reported severe anxiety among family and friends. Among patients with oesophageal cancer those with a palliative treatment strategy, compared with curative strategy, reported significantly lower QOL (mean ± SD, 50.8 ± 28.6 vs 62.0 ± 22.9 p = 0.030), physical (65.5 ± 22.6 vs 83.9 ± 16.5, p < 0.001) and role functioning (55.7 ± 36.6 vs 73.9 ± 33.3, p = 0.012), and a higher burden of several symptoms and problems. No significant differences between treatment groups were shown among patients with gastric cancer.CONCLUSIONS: Patients newly diagnosed with oesophageal and gastric cancer, and especially those with incurable oesophageal cancer, have a severely affected QOL and several burdensome symptoms and problems. To better address patients' needs, it seems important to integrate a palliative approach into oesophageal and gastric cancer care.
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10.
  • Efraimsson, Eva, et al. (författare)
  • Discharge planning : "fooling ourselves?"--patient participation in conferences.
  • 2004
  • Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 13:5, s. 562-570
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The aim of discharge planning conferences (DPCs) is to co-ordinate resources and to enhance patient involvement in care in connection with relocation from hospital. DPCs can be characterized as institutional conversations, and are often executed as standard procedures, but the scientific basis for the activity is weak. AIMS AND OBJECTIVES: The aim of this study was to illuminate and describe the communication at DPCs. DESIGN: A purposeful and consecutive sample of eight DPCs was collected in which the future care of eight women, aged 70 years or more, was discussed. METHODS: Transcribed video recordings were analysed in two steps. "The initial analysis" aimed at describing the structure and content of the communication. This description constituted the basis for an interpretation, leading to "the focused analysis" aiming at finding evidence for the assumptions made in the interpretation. RESULTS: The result revealed that the participation of patients was very less the DPCs. The decisions had often already been made, and the women were expected to be pleased with the decision; institutional representatives (IRs) frequently justified their actions by referring to bureaucratic praxis. CONCLUSIONS: The women were both encouraged and excluded from participation by the IRs. This dichotomy occurred because the IRs, as professionals, struggled to simultaneously realize their caring mission and their obligation to enforce the values and rules of the institution, i.e. efficiency and rationality. Thus, IRs and patients were equally imprisoned within the institutional system. RELEVANCE TO CLINICAL RESEARCH: This result illustrates how conflicting paradigms are imbedded and reproduced by healthcare professionals in their communicative praxis. Awareness of this is a prerequisite for improvements in working procedures congruent with a caring paradigm that support patient participation.
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11.
  • Efraimsson, Eva, et al. (författare)
  • "They were talking about me"--elderly women's experiences of taking part in a discharge planning conference.
  • 2006
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 20:1, s. 68-78
  • Tidskriftsartikel (refereegranskat)abstract
    • INTRODUCTION: Discharge planning procedures needs improving to make transition to care settings in the community smooth, safe and secure. Research about discharge planning that involves a patient perspective is limited. The intention of this study was to focus on the patients' (elderly women) experiences of taking part in discharge planning conferences (DPCs) to deepen our understanding of the meaning of facing "the world of the institution" from a life-world perspective. AIM: This study aims at describing elderly women's experience of taking part in a DPC as they are about to be discharged from hospital. METHODOLOGICAL DESIGN: To illuminate the phenomenon from a life-world perspective, an interview study was chosen. Eight follow-up interviews with seven elderly women were carried out. The interviews were analysed using a qualitative content analysis methodology. FINDINGS: The interpretation of data was that the women's future was as in suspense as they got ill or were hit by accidents. The analysis revealed four themes that reflected the women's experiences of taking part in the DPCs: Being affiliated; Being in focus, Standing outside; and finally Being unprepared. STUDY LIMITATIONS AND CONCLUSION: The limitations of the study are related to: selection of participants; participation in the interview was connected to a video recording study; gap in time between participation in the DPC and the interview. The findings are still seen as trustworthy as the experiences expressed by the participating women in data are to be seen as a contribution to an emerging understanding of the meaning of the phenomenon from a life world perspective. The findings make clear that the institutional world easily and without much resistance from the patients transgresses the border of their life worlds. This awakes a need to reconsider how a caring perspective can be established in practice.
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12.
  • Fallbjörk, Ulrika, 1967-, et al. (författare)
  • Aspects of body image after mastectomy due to breast cancer : a two-year follow up study
  • 2013
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 17:3, s. 340-345
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: This 2-year follow-up study explores aspects of body image after mastectomy due to breast cancer.Materials and Methods: This population-based study included 76 women living in northern Sweden who, during November 2006 to October 2007, underwent mastectomy due to breast cancer. The women completed a questionnaire entitled “Life After Mastectomy (LAM)” 10 months after the mastectomy and again 2 years later. We used SPSS version 18.0 for data processing and analysis.Results:The findings indicate that few significant changes in body image had taken place during the 2-year interval between the first and second completion of the questionnaire. An exception was a significant decrease in feelings of sexual attractiveness and comfort during sexual intimacy. At follow-up, 21% of the women had undergone breast reconstruction (BR). They were significantly younger than the women who had not had BR (53 v. 63 years). Besides being younger, no other significant differences could be found between those women who had undergone BR and those who had not. The fact that the decrease in sexual attractiveness and feelings of comfort during sexual intimacy also applied to the subgroup of women who had had BR may therefore be surprising. A better understanding of issues related to breast cancer treatment and sexual function is vital.Conclusion: It is important for health care professionals to be aware of problems related to sexual intimacy and to be prepared not just to provide information about these, but also to reflect on expectations v. reality together with the women.
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13.
  • Fallbjörk, Ulrika, 1967-, et al. (författare)
  • Differences between women who have and have not undergone breast reconstruction after mastectomy due to breast cancer
  • 2010
  • Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 49:2, s. 174-179
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim: This study compares potential differences between women with breast cancer who after mastectomy had undergone breast reconstruction with those who had not. Material and methods: All women (N=149) in the northern medical region of Sweden who had undergone mastectomy in 2003 received a self-reported questionnaire entitled “Life After Mastectomy (LAM)” that included standardized measures of sociodemographic, decision-making process, breast reconstruction (BR) yes or no, sexuality, and body image. SPSS was used for data processing. Results: In total 85% of the women returned the questionnaire and of these 25% had undergone BR. In accordance with previous studies, we found that the mean age of the women in the BR group was significantly lower (52 vs. 64 years), they had a higher education, and a higher proportion were employed, influenced by the physician's opinion regarding BR, sexually active, and rated a negative impact concerning the factors attractiveness and body disclosure. A multiple regression analysis, however, showed that the choice to undergo breast reconstruction or not was only independently associated with age, feeling of attractiveness and sexual interest. Discussion: Age explained most differences found between the two groups. When researchers try to identify what differentiates the groups of women who undergo reconstruction between those who do not undergo reconstruction after mastectomy, it is thus necessary to take into consideration that the meanings of mastectomy, body image, attractiveness and similar variables may vary due to the phase of a woman's life. In conclusion, considering the impact of age is of paramount importance in future studies for our understanding of women's experiences.
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14.
  • Fallbjörk, Ulrika, 1967-, et al. (författare)
  • From "no big deal" to "losing oneself" : different meanings of mastectomy
  • 2012
  • Ingår i: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 35:5, s. E41-E48
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Because of early detection and advanced treatment options, more women with breast cancer survive after mastectomy and thus have to face the choice of living with or without a reconstructed breast for many years to come. Objective: This article investigates these women’s narratives about the impact of mastectomy on their lives, as well as their reflections on breast reconstruction.Methods: Fifteen women were strategically chosen from a previous population-based study on mastectomy. They were contacted for further exploration in thematic narrative-inspired interviews 4.5 years after mastectomy.Results: Three types of storylines were identified. In the first storyline, the mastectomy was described as ‘‘no big deal’’; losing a breast did not disturb the women’s view of themselves as women, and breast reconstruction was not even worth consideration. In the second storyline, the women described the mastectomy as shattering their identity. Losing a breast implied losing oneself as a sexual being, a woman, and a person. The third storyline fell in between the other two; the sense of femininity was wounded, but not to the extent that they felt lost as women.Conclusion: Our findings suggest that the experience of mastectomy due to breast cancer is very much individual and contextual. Losing a breast may be of minor or major importance.Implications for Practice: Healthcare practitioners should be attentive to how the women themselves experience the personal meaning of losing a breast and guard against vague preconceptions based on the breast-sexuality-femininity discourse and its connection to what the patient needs.
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15.
  • Fallbjörk, Ulrika, 1967- (författare)
  • I spåren av bröstcancer : att leva med eller utan ett rekonstruerat bröst efter mastektomi
  • 2012
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Bakgrund: I Sverige är bröstcancer den vanligaste formen av kvinnlig cancer och utgör nära en tredjedel av kvinnlig cancer. I behandlingen av bröstcancer har kirurgi en betydande roll. Nära hälften av kvinnorna genomgår mastektomi, men det finns en stor variation inom landet. Att förlora ett bröst efter mastektomi har såväl en kroppslig som psykologisk innebörd. Avhandlingen omfattar fyra delstudier som beskriver detta på olika sätt.Syfte: Det övergripande syftet med avhandlingen är att studera betydelsen av att förlora ett bröst på grund av cancersjukdom samt motiv och beslutsprocess i ställningstagande till att leva med eller utan ett rekonstruerat bröst.Metod: Avhandlingen baseras på två populationer av kvinnor boende i norra Sverige som genomgått mastektomi på grund av bröstcancer: de kvinnor som genomgått mastektomi under 2003 (delstudie I–III) samt de kvinnor som genomgått mastektomi mellan oktober 2006 och september 2007 (delstudie IV). Dessa kvinnor identifierades via det regionala cancerregistret, onkologiskt centrum, Norrlands universitetssjukhus. Statistiska analyser genomfördes i delstudie I och IV och tematisk narrativ analys har tillämpats i delstudie II och III.Resultat: Delstudie I: År 2007 skickades ett nykonstruerat självskattningsformulär ”Life After Mastectomy” (LAM) ut till 149 kvinnor varav 85% (n=126) besvarades. Av dessa kvinnor hade 25% genomgått bröstrekonstruktion. Resultaten av en multipel regressionsanalys visade att bröstrekonstruktion var signifikant relaterat till lägre ålder, känsla av att vara attraktiv och sexuellt intresse. För att få en djupare och mer nyanserad förståelse kring innebörder av att förlora ett bröst efter mastektomi och motiv till att avstå från eller genomgå bröstrekonstruktion gjordes ett strategiskt urval av 15 kvinnor från delstudie I som deltog i en forskningsintervju(delstudie II). I den tematiska narrativa analysen identifierades tre typberättelser. I den första typberättelsen beskrevs mastektomin som ”no big deal” och att genomgå en bröstrekonstruktion var inte ens värt att överväga. I den andra typberättelsen beskrevs mastektomin som ”att förlora sig själv” och en bröstrekonstruktion beskrevs som ett sätt att återställa sig som person, kvinna och sexuell varelse. Den tredje typberättelsen intog en position mellan ”no big deal” och ”att förlora sig själv” och en bröstrekonstruktion beskrevs som ett välkommet erbjudande vilket gjorde det enklare att se och känna sig som kvinna. I delstudie III undersöktes sex kvinnors erfarenheter av att genomgå bröstrekonstruktion. Samtliga kvinnor var oförberedda på den krävande procedur som de genomgick. De beskrev processen som svår och smärtsam med upprepade operationer och en oväntat lång konvalescenstid. Även om kvinnorna var oförberedda på hur tufft det skulle komma att bli både fysiskt och emotionellt beskrevs bröstrekonstruktionen  som betydelsefull för dem. Delstudie IV: I denna uppföljningsstudie inkluderades kvinnorna 10 månader efter mastektomin då självskattningsformuläret LAM skickades ut. Datainsamlingen med samma formulär upprepades två år senare (tre år efter mastektomin). Kvinnornas (n=76) känsla av attraktivitet och kvinnlighet hade inte förändrats mellan de två mättillfällena, med undantag för vissa aspekter av sexualitet som hade försämrats. Vid uppföljningen hade 21% av kvinnorna genomgått bröstrekonstruktion och dessa kvinnor var yngre. I övrigt kundeinga signifikanta skillnader ses mellan de kvinnor som genomgått respektiveej genomgått bröstrekonstruktion.Slutsats: Denna avhandling ger en inblick i betydelsen av att förlora ett bröst efter mastektomi. Att förlora ett bröst efter mastektomi kan vara av mindre eller större betydelse. För de kvinnor som upplevde bröstförlusten som en förlust av sig själva, kom en bröstrekonstruktion att betraktas som en livsnödvändighet (delstudie II). De flesta av kvinnorna 75% i delstudie I och 79% i delstudie IV genomgick inte någon bröstrekonstruktion. De kvinnor som genomgick rekonstruktiv kirurgi beskrev proceduren som svår fysiskt och emotionellt, men trots detta sågs den som viktig för dem (delstudie III). Vid uppföljningen i delstudie IV, var kvinnornas upplevelse av attraktivitet och kvinnlighet oförändrade, men upplevelsen av att känna sig bekväm vid sexuell intimitet utvecklades negativt. Detta var oberoende av om kvinnan genomgått bröstrekonstruktion eller inte, vilket kan ses som överraskande. Det är viktigt att som sjukvårdpersonal uppmärksamma hur den enskilda kvinnan själv upplever betydelsen av att ha förlorat ett bröst för att inte låta sig styras av vaga schabloner kring relationen bröst–sexualitet–kvinnlighet.
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16.
  • Hajdarevic, Senada, et al. (författare)
  • Qualitative cross-country comparison of whether, when and how people diagnosed with lung cancer talk about cigarette smoking in narrative interviews
  • 2018
  • Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 8:11
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVES: To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help-seeking.DESIGN: A qualitative cross-country comparison with analysis of narrative interviews.SETTING: Participants in Sweden, Denmark and England were interviewed during 2015-2016. Interviews, using a narrative approach, were conducted in participants' home by trained and experienced qualitative researchers.PARTICIPANTS: Seventy-two men and women diagnosed with lung cancer were interviewed within 6 months of their diagnosis.RESULTS: The English participants, regardless of their own smoking status, typically raised the topic of smoking early in their interviews. Smoking was mentioned in relation to symptom appraisal and interactions with others, including health professionals. Participants in all three countries interpreted their symptoms in relation to their smoking status, but in Sweden (unlike England) there was no suggestion that this deterred them from seeking care. English participants, but not Swedish or Danish, recounted reluctance to consult healthcare professionals with their symptoms while they were still smoking, some gave up shortly before consulting. Some English patients described defensive strategies to challenge stigma or pre-empt other people's assumptions about their culpability for the disease. A quarter of the Danish and 40% of the Swedish participants did not raise the topic of smoking at any point in their interview.CONCLUSION: The causal relationship between smoking and lung cancer is well known in all three countries, yet this comparative analysis suggests that the links between a sense of responsibility, stigma and reluctance to consult are not inevitable. These findings help illuminate why English patients with lung cancer tend to be diagnosed at a later stage than their Swedish counterparts.
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17.
  • Hajdarevic, Senada, et al. (författare)
  • You Need to Know More to Understand My Scoring on the Survey : Free-Text Comments as Part of a PROM-Survey of Men with Prostate Cancer
  • 2016
  • Ingår i: Open Journal of Nursing. - : Scientific Research Publishing, Inc.. - 2162-5336 .- 2162-5344. ; 6:5, s. 365-375
  • Tidskriftsartikel (refereegranskat)abstract
    • Prostate cancer and its treatment have long-term implications for men's lives. We aimed to describe the content, extent, and frequency of written comments to the open-ended question, "Further comments?" in the patient-reported outcome measures questionnaire. During the study period, 897 men participated; 372 wrote 747 free-text comments in the questionnaire. These comments were analysed using qualitative content analysis and were grouped into four categories: 1) prostate cancer's influence on health; 2) clarifications of answers to the survey; 3) descriptions of well-being despite the cancer; and 4) experiences of care and the need for contact with health care. The distribution of the comments shifted over time. The open-ended question not only allowed the participants to explain their other responses and describe important aspects of their lives during and after treatment, something not normally covered by a questionnaire, but it also indicated their experiences of health care services along the patients' PC-trajectory. This further raises the issue of including an open-ended item in a forced-choice survey into the ethical realm to ensure that proper care is taken of participants’ answers and thoughts.
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18.
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19.
  • Hedman, Christel, et al. (författare)
  • Dying during the COVID-19 Pandemic in Sweden : Relatives' Experiences of End-of-Life Care (the CO-LIVE Study)
  • 2022
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601. ; 19:23
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the "first wave" and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons.METHODS: A random sample of addresses for 2400 people who died during March-September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust.RESULTS: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group ( p < 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received "enough care from physicians", significantly fewer than the non-COVID group (65%, p < 0.01). CONCLUSION: Relatives' experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.
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20.
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21.
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22.
  • Klarare, Anna, et al. (författare)
  • Actions helping expressed or anticipated needs : Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams
  • 2018
  • Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 27:6
  • Tidskriftsartikel (refereegranskat)abstract
    • Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients’ and family caregivers’ experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.
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23.
  • Klarare, Anna, et al. (författare)
  • Experiences of security and continuity of care : patients' and families' narratives about the work of specialized palliative home care teams
  • 2017
  • Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:2, s. 181-189
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Those who are seriously ill and facing death are often li ing with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.OBJECTIVE: Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).METHOD: A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.RESULTS: Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.SIGNIFICANCE OF RESULTS: Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.
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24.
  • Klint, Åsa, et al. (författare)
  • Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough
  • 2019
  • Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 1873-6513 .- 0885-3924. ; 58:5, s. 1-791
  • Tidskriftsartikel (refereegranskat)abstract
    • CONTEXT: Fear of pain resonates with most people, in particular, in relation to dying. Despite this, there are still people dying with unrelieved pain.OBJECTIVES: We quantified the risk, and investigated risk factors, for dying with unrelieved pain in a nationwide observational cohort study.METHODS: Using data from Swedish Register of Palliative Care, we analyzed 161,762 expected deaths during 2011-2015. The investigated risk factors included cause of death, place of death, absence of an end-of-life (EoL) conversation, and lack of contact with pain management expertise. Modified Poisson regression models were fitted to estimate risk ratios (RRs) and 95% confidence intervals (CIs) for dying with unrelieved pain.RESULTS: Unrelieved pain during the final week of life was reported for 25% of the patients with pain, despite prescription of opioids PRN in 97% of cases. Unrelieved pain was common both among patients dying of cancer and of nonmalignant chronic diseases. Statistically significant risk factors for unrelieved pain included hospital death (RR = 1.84, 95% CI 1.79-1.88) compared with dying in specialist palliative care, absence of an EoL conversation (RR = 1.42, 95% CI 1.38-1.45), and dying of cancer in the bones (RR = 1.13, 95% CI 1.08-1.18) or lung (RR = 1.10, 95% CI 1.06-1.13) compared with nonmalignant causes.CONCLUSION: Despite almost complete prescription of opioids PRN for patients with pain, patients die with unrelieved pain. Health care providers, hospitals in particular, need to focus more on pain in dying patients. An EoL conversation is one achievable intervention.
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25.
  • Lindahl, Berit, et al. (författare)
  • On becoming dependent on home mechanical ventilation.
  • 2005
  • Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 49:1, s. 33-42
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: The aim of this paper is to illuminate meanings of becoming dependent on home mechanical ventilator treatment. BACKGROUND: People suffering from chronic alveolar hypoventilation and requiring home mechanical ventilation represent a small but increasing group in society, and are some of the most vulnerable individuals with chronic disabilities. METHOD: Thirteen people about to begin ventilator treatment at home were interviewed. Data were tape-recorded and analysed according to a phenomenological-hermeneutic method. FINDINGS: Findings revealed two contrasting meanings of being in the process of becoming dependent on a ventilator, interpreted as getting breath or holding breath. This interpretation is presented in two composite stories. CONCLUSIONS: The findings imply possibilities and deficiencies in meeting patients' existential needs, such as helping them to breathe spiritually by supporting them as they get their breath after such a life-changing event as becoming dependent on a ventilator.
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26.
  • Lindahl, Berit, et al. (författare)
  • On being dependent on home mechanical ventilation : depictions of patients' experiences over time.
  • 2006
  • Ingår i: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 16:7, s. 881-901
  • Tidskriftsartikel (refereegranskat)abstract
    • In this study, the authors describe the meanings of experiences of being dependent on a ventilator (HMV) and living at home as narrated by 13 people who had been using a ventilator via a mask or tracheostomy for half a year. The analyses revealed various movements across time toward the goal of using the ventilator successfully, and some narratives depicted suffering caused by care. The analyses also yielded different representations of embodiment. These findings were abstracted into two contrasting meanings of the experience of using HMV over time: a closing in or an opening up of the lived body, oneself, to other people and to the world. The authors illustrate this interpretation with two images. Ignorance and negative attitudes on the part of professionals working and/or managing care in the patients' homes are interpreted as causing suffering and intensifying a closed-in mode of being.
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27.
  • Lindblad, Britt-Marie, et al. (författare)
  • Being in tune with oneself, children, and parents : meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals.
  • 2005
  • Ingår i: Journal of Pediatric Nursing. - : Elsevier BV. - 0882-5963 .- 1532-8449. ; 20:3, s. 214-223
  • Tidskriftsartikel (refereegranskat)abstract
    • The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.
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28.
  • Lindblad, Britt-Marie, et al. (författare)
  • Being invigorated in parenthood : parents' experiences of being supported by professionals when having a disabled child.
  • 2005
  • Ingår i: Journal of Pediatric Nursing. - : Elsevier BV. - 0882-5963 .- 1532-8449. ; 20:4, s. 288-297
  • Tidskriftsartikel (refereegranskat)abstract
    • The purpose of the study was to know the meaning of parents' experiences of being supported by professionals when having a child with disability. Data were obtained through unstructured interviews with 16 parents within 10 families and analyzed by a phenomenological-hermeneutic approach. Parents narrated experiences of being supported and not being supported, and the findings are presented as contrasting meanings. Being supported by professionals means gaining confidence as a parent and having the child seen as valuable. This is interpreted as being invigorated in parenthood, where sharing the mutual task and goal, which is the child's best, with professionals is a crucial aspect. The meaning of experiences of lack of support illuminates the consequences for the entire family's well-being and the struggle parents experience to gain confidence as parents and recognition of the child as valuable.
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29.
  • Lindqvist, Olav, 1961- (författare)
  • Att leva med kroppsliga förändringar vid obotlig cancersjukdom med fokus på prostatacancer : ”jag är frisk – bortsett från att jag har cancer som är dödlig, men det är liksom en annan sak”
  • 2007
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • The overall aim of this thesis is to illuminate and describe bodily changes and problems in incurable cancer, with focus on prostate cancer, from the patient’s perspective. The thesis consists of four papers, each of which illuminates various aspects of the phenomenon studied. The study population consisted of 24 participants, three women with different cancer diagnoses in the palliative phase, and 21 men with hormone refractory prostate cancer (HRPC) and skeletal metastases. Data are based on interviews (papers I–IV) and a quality of life questionnaire (paper I). The study design is cross-sectional (papers I–III) and longitudinal (paper IV). Qualitative description, descriptive statistics, phenomenological hermeneutics, and analysis of discourse were used to analyze data. The findings of study I show that the dominating symptoms for the men with HRPC (n=20) were pain and fatigue, and three different variants of each problem were described. The men said that changes in their sex life were not an extensive problem, even if it was scored as such. The symptoms differed in occurrence, extent, and meaning between the men, and were not necessarily experienced as problems. In study II, pain and fatigue were again the most prominent problems in men with HRPC (n=18), but pain and fatigue were seen to have different meanings. Pain was seen as synonymous with cancer. Pain can be alleviated, but it is a threat, both now and in the future, and symbolizes a painful death. Fatigue was viewed as a hindrance in the present. It was experienced as less threatening than pain, but as something that cannot really be changed. Fatigue represents the natural course death will take, as eventually sleep into death. An important finding of study II is that one meaning of bodily problems is to live in a cyclical movement of losing and reclaiming wellness. Understanding, and, to some extent, being in control of, bodily problems makes it possible to experience wellness. When the bodily problems increase or change, or when new problems appear or become a hindrance in the daily life, the experience of being ill returns. The findings of study III show that one meaning of fatigue in patients with cancer in the palliative phase (n=4) is a lived bodily experience of approaching death. This can be understood through the paradox of struggling against fatigue, and hoping to overcome it, yet expecting failure. The body, through fatigue, signals to the person that death is approaching, but the person is not yet “ready”. Paper IV shows that the way two of the men with HRPC talked about the past, present, and future changed during the disease trajectory. In the first interview, the men were open towards both the past and the future, while just before death, their narration was totally dominated by the concrete experience of the illness. The past became the past in the illness and not in life, and the present was flooded with extensive bodily changes. Also, the future had shrunk, although it also had been transferred to beyond death. Pain, fatigue, nausea, and other bodily problems figured largely in this change. This thesis provides important insights into the phenomenon of bodily changes when living with incurable cancer, with focus on prostate cancer. The thesis shows the connection between bodily changes and time, where different bodily changes have different meanings, and meanings seem to change during the illness trajectory (papers I–IV); and bodily changes close to death seem to take “all” time; what is left is the present filled with problems (paper IV). Further, it shows that bodily changes have a great influence on the cyclical movement between losing and reclaiming wellness in incurable cancer (paper II). The clinical implications of the thesis are that alleviation of pain and other bodily problems must be based on the meaning the patient gives the bodily changes taking place. That is, alleviation with the purpose to free time and to facilitate living in wellness as death is approaching.
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30.
  • Lindqvist, Olav, et al. (författare)
  • Experiences of symptoms in men with hormone refractory prostate cancer and skeletal metastases
  • 2008
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 12:4, s. 283-290
  • Tidskriftsartikel (refereegranskat)abstract
    • Advanced prostate cancer with skeletal metastases entails significant symptoms from both treatment and the disease itself. Although the diagnosis is a common one, knowledge of the symptom experience late in the disease trajectory is limited. The aim of the present study was to describe the experience of physical symptoms in men with hormone refractory prostate cancer and skeletal metastases. Twenty men answered a quality of life questionnaire before participating in semi-structured interviews. The interviews were analyzed using qualitative description. Findings show that the dominant symptoms were lack of energy and pain. Interestingly when talking about lacking energy the men described three different variants; lack of mental energy or initiative, lack of strength and stamina, and tiredness or sleepiness. Also, three different types of pain were described; pain from skeletal metastases, a diffuse moving pain, and pain not directly caused by the prostate cancer. Though a majority of the men scored being dissatisfied with their sex life; in the interviews, this was not described as a major distress. The findings also showed that the men experienced different symptoms despite the same diagnosis, skeletal metastases, stage, and androgen deprivation treatment, and that these symptoms are not necessarily experienced as problems or causing distress.
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31.
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32.
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33.
  • Lindqvist, Olav, et al. (författare)
  • Time and Bodily Changes in Advanced Prostate Cancer : Talk About Time As Death Approaches
  • 2008
  • Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 36:6, s. 648-656
  • Tidskriftsartikel (refereegranskat)abstract
    • The disease trajectory of living with incurable cancer is characterized by, increasing bodily deterioration and problems. In this paper, we have focused on the change in temporal awareness as manifested in the narrations of two men with hormone refractory prostate cancer and, skeletal metastases as they approach death. The two men participated in in-depth research interviews during the last part of their lives, sharing a similar disease trajectory with increaseing bodily change and decreasing physical function. Both died a lingering cancer,related death. The first and last research interviews were analyzed using a discourse analytic method. Findings show that the temporal awareness in the interviews changes as the illness progresses and death approaches. In the last interviews, the present is flooded with bodily problems; the past and the future are hardly present except for the future beyond the mens own deaths. Pain.,fatigue, nausea, and other symptoms figure largely in this change, and there is no time for much more than attending to bodily needs in a present that is dominated by problems. Here, the importance of alleviating bodily problems once again becames paramount, and two questions are raised: Is the often reported withdrawal from life, when death is imminent, a physical necessity rather than a psychological one, and is it possible to free time from, the time-consuming problems of the present by means of a more concentrated attempt, to alleviate these problems?
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34.
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35.
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36.
  • Malmström, Marlene, et al. (författare)
  • It is important that the process goes quickly, isn't it?” A qualitative multi-country study of colorectal or lung cancer patients’ narratives of the timeliness of diagnosis and quality of care
  • 2018
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 34, s. 82-88
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden. Method: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach. Results: Participants’ accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow. Conclusions: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.
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37.
  • Nilsson, Anita, et al. (författare)
  • A threat to our integrity : meanings of providing nursing care for older patients with cognitive impairment in acute care settings
  • 2016
  • Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 30:1, s. 48-56
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Older people with cognitive impairment represent a large group of patients in acute care settings. Research show that these acute care environments can be unsafe and even unfriendly for frail older patients. Research and clinical experience show that being a nurse in acute/specialised medical facilities means to work in a high-speed, technologically complex and demanding environment. When caring for older patients with cognitive impairment, nurses' workload and responsibilities have been shown to increase. This is largely dependent on how easily it is to connect with and help patients understand what to do, and what is best for them.AIM: This study aimed to illuminate meanings of caring for older patients with cognitive impairment in acute care settings as experienced by nursing staff.METHOD: A purposeful sample of thirteen nurses experienced in caring for older people with cognitive impairment in acute care settings participated in the study. Narrative interviews were conducted during autumn 2012 and interpreted using a phenomenological hermeneutic method.FINDINGS: Caring for older, acutely ill cognitively impaired patients was found to be very complex. The meanings of caring for these older patients seemed to change depending on the nurses' perceptions of the patients and the gap between what they could do (real) and wanted to do (ideal) in providing care for them. The greater this gap was felt to be and the more care was perceived as meaningless, the more serious was the threat to nurses' personal-professional integrity which could be at risk, compromised or harmed.CONCLUSION: The comprehensive understanding indicates that being a nurse and having to care for older patients in acute care settings means providing nursing care in an environment that does not support possibilities to protect and develop nurses' personal-professional integrity.
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38.
  • Nilsson, Anita, 1960- (författare)
  • Att vårda äldre personer med kognitiv svikt i sjukhusmiljöer : attityder, processer, innebörder
  • 2013
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Inledning: Äldre personer med kognitiv svikt, exempelvis i form av demenssjukdom, delirium eller depression, är en vanligt förekommande population inom svensk sjukhusvård. Dessa äldre kan ha särskilda behov till följd av en försämrad kognition, men litteraturen tyder på att akutsjukhusens miljö, organisation och vårdprocesser inte alltid stödjer tillgodoseendet av dessa behov.Syfte: Det övergripande syftet med avhandlingen var att belysa vården av äldre personer med kognitiv svikt i sjukhusmiljöer.Metoder: Avhandlingen består av fyra delstudie. I studie I tillämpades en tvärsnittsdesign för att utforska personalens attityder till äldre patienter med kognitiv svikt, personalens tillfredsställelse med vården och arbetet samt upplevelsen av personcentrerat vårdklimat (n=391). I studie II användes en Grounded theory design för att undersöka hinder för personcentrerad vård för äldre personer med kognitiv svikt på en akutmedicinsk vårdavdelning. I studie III tillämpades en tvärsnittsdesign för att utforska de psykometriska egenskaperna i den svenska versionen av ”The Person-centred care of Older People with cognitive impairment in Acute Care scale” (POPAC) i ett urval av sjukhuspersonal (n=293). I studie IV användes en fenomenologisk hermeneutisk design för att belysa innebörder av att vårda äldre patienter med kognitiv svikt på akuta sjukvårdavdelningar utifrån vårdpersonals (n=13) berättelser.Resultat: Studie I visade att deltagande personal skattade en neutral attityd till äldre patienter med kognitiv svikt i spektret mellan negativa och positiva attityder, samt att faktorer som att vara yngre, undersköterska och att uppleva vården av de äldre som betungande, hade samband med mer negativa attityder. Resultaten visade också att vårdpersonal upplevde att äldre patienters kognition sällan utvärderades under vårdtiden, samt att man sällan baserade vården på evidensbaserade riktlinjer för vård av äldre med kognitiv svikt. Studie II belyste att ett organisatoriskt fokus på medicinska behov, åtgärder och rutiner bidrog till att personal hamnade steget efter i relation till att synliggöra och möta dessa äldre personers multidimensionella behov, och att detta kunde medföra tecken på vårdlidande för de äldre, utanförskap för närstående och frustration för personal. Studie III stödde en fortsatt användning av POPAC-skalan för skattningar av upplevd förekomst av personcentrerade vårdprocesser för äldre patienter med kognitiv svikt, men att ytterligare studier rekommenderades framförallt av skalans olika dimensioner. Studie IV belyste att ju större avstånd som upplevs mellan vad vårdpersonalen kan göra (verklig vård) och vad de vill göra (ideal vård) för äldre patienter med kognitiv svikt i akuta vårdmiljöer, desto meningslösare upplevs vården, och desto större blir hotet mot personalens personlig-professionella integritet. Den tolkade helheten visar på att vårda äldre patienter med kognitiv svikt inom akutsjukvård betyder att försöka ge omvårdnad i miljöer som inte stödjer vårdpersonalens personlig-professionella integritetSlutsatser: En rimlig konklusion av dessa resultat är att det i sjukhusmiljöer där äldre patienter ofta vårdas kan finnas anledning att diskutera och ytterligare studera hur attityder, synsätt på och målsättningar för vården och dess innehåll, åtgärder och interventioner kan främja eller motverka en god omvårdnad för de äldre med kognitiv svikt. Det kan också finnas anledning att se över hur personalen kan stödjas i att ge person-centrerad vård till de äldre, exempelvis genom riktlinjer för vård av äldre personer med kognitiv svikt, standardiserade skattningar av kognition, samt implementering av vårdprocesser som stödjer en personcentrerad vård för dessa patienter. Det kan också finnas behov av att ytterligare kritiskt granska hur organisatoriska och miljömässiga faktorer på avdelningar stödjer eller motverkar en personcentrerad vård för äldre patienter med kognitiv svikt. Därtill kan det finnas behov av att skapa ytterligare förutsättningar för vårdpersonalen att bevara och utveckla sin personlig-professionella integritet genom att utveckla miljöer som ger möjligheter för dem att ge en god omvårdnad till dessa äldre.
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39.
  • Näppä, Ulla, 1960-, et al. (författare)
  • Can a performance status questionnaire decrease palliative chemotherpy in the last months of life?
  • Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
    • Background: Physicians often offer further palliative chemotherapy treatments (PCT) late in the cancer disease trajectory, even when treatment benefits are doubtful.Objective: Our main aim was to investigate whether routine use of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire would affect the proportions of patients receiving PCT during the last month of life, hospital admissions, documentation of performance status and the decisions to cease PCT, and/or place of death. A secondary aim was to gather registered nurses’ experiences of PSPC in routine use.Methods: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Patients’ comments in the questionnaires were analyzed and nurses reflections collected in a work-journal.Results: No significant differences were found between users or non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (38% versus 17%). Nurses considered the questionnaires superior to verbal communication in providing accurate pictures of patients’ performance status.Limitations: The results of this interim analysis could have been more significant if the originally planned number of patients had been recruited.Conclusion: The proportion of patients receiving PCT during the last month of life was lower than in a previous study (25% versus 32%). As we found no significant differences between the study group and the control group, we cannot claim this to be an effect of PSPC use.
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40.
  • Näppä, Ulla, 1960-, et al. (författare)
  • Challenging situations when administering palliative chemotherapy : a nursing perspective
  • 2014
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 18:6, s. 591-597
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
    • Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer.Methods: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis.Results: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician.Conclusion: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members – nurses, physicians, patients, and relatives – are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.
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41.
  • Näppä, Ulla, 1960- (författare)
  • Dilemmas in palliative chemotherapy when approaching end-of-life
  • 2014
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Background When cure is no longer possible, medical care should aim for a transition to palliative care regardless of disease. Patients with incurable cancer are often treated with palliative chemotherapy (PCT), starting with the intent to prolong life and increase quality of life. Eventually, in the late stages of the disease, the patient reaches a transition phase when further PCT neither prolongs life nor adds any predominantly positive effects.Aim of the thesisStudy I: To analyse the proportion of patients with incurable cancer who received palliative chemotherapy during the last month of life, and to identify their discriminative characteristics.Study II: To develop a questionnaire assessing performance status in palliative chemotherapy, and to test its psychometric properties.Study III: To explore challenging situations experienced by registered nurses when administering palliative chemotherapy to patients with incurable cancer.Study IV:  To investigate whether routine use of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire in PCT would affect the proportion of patients receiving PCT during the last month of life, hospital admissions, notifications of performance status, documented decisions of ceasing PCT in the medical records, and/or place of death. A secondary aim was to gather registered nurses’ experiences of PSPC in clinical use.Methods In Studies I and IV, information from the medical records of deceased patients with epithelial cancers was used in descriptive analyses of the proportions of patients receiving PCT in counties in northernmost Sweden. A quantitative design was chosen, using non-parametric statistical methods. In Study II, a brief patient-completed questionnaire assessing performance status was developed and psychometrically tested. In Study III, data from research interviews with registered nurses were analysed qualitatively with a narrative thematic approach.Results Studies I and IV showed that about 25% of patients receiving PCT were treated during the last month of life. This group of patients had more hospital admissions, were less likely to die at home, and had fewer instances of documentation of the decision to cease PCT. The questionnaire developed in Study II was shown to have acceptable psychometric qualities such as reliability, validity, and sensitivity to detect deterioration in performance status. Study IV showed that the questionnaire gave nurses valuable information about patients’ performance status. The results also showed that 97% of nurses and 48% of physicians documented their patients’ performance status in the medical records. Study III demonstrated that when nurses administered PCT they considered futile, they could experience dilemmas created by the unforeseeable outcomes of PCT or stemming from insufficient communication between nurses, patients, next-of-kin, and physicians.Conclusions Administration of PCT can create dilemmatic situations for both the patient and medical staff when approaching end-of-life. This is underlined by the finding that some 25% of treated patients received their last round of PCT as late as during the last month of life. The decisions to cease PCT were less likely to be documented for patients who had received PCT within a month before death. Nurses described situations where they felt they were in the middle of the decision-making process regarding whether or not to continue PCT. They found the treatments were given on the authority of someone else; the physician’s recommendation or the patient’s and/or relatives’ request.The unpredictability of PCT was a continuous theme in the work described in this thesis, emphasizing the necessity of individually assessing every patient before PCT in order to minimize the risk of futile treatments. The attempt to develop a reliable and valid questionnaire for systematic assessment of performance status has increased future possibilities to monitor this parameter in PCT when approaching end-of-life. The questionnaire developed as part of this thesis has provided nurses with increased knowledge of patients’ performance status. If routinely used, it may help decrease the proportion of patients receiving PCT during the last month of life, though this remains to be rigorously proven. Further research efforts are needed to progress in the task of optimizing rather than maximizing the use of PCT when approaching end-of-life.
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42.
  • Olsson Möller, Ulrika, et al. (författare)
  • A Reduced Deck of Conversation Cards of Wishes and Priorities of Patients in Palliative Care
  • 2022
  • Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams and Wilkins Ltd.. - 1522-2179 .- 1539-0705. ; 24:3, s. 175-180
  • Tidskriftsartikel (refereegranskat)abstract
    • The individual wishes and priorities of patients with advanced disease are too often neglected, making a deck of cards with statements reflecting potential wishes and priorities a useful conversation tool. However, in the most ill patients, the card selection and sorting process may be too strenuous. The aims of this study were to explore the wishes and priorities of patients receiving palliative care and to reduce a deck of statement cards to be clinically useable even for the most ill patients. In interviews, participants selected their top 10 from a deck of 46 statement cards. Descriptive and analytical statistics were used. Thirty-nine patients from 5 specialized palliative care units in Sweden participated. Six participants died within 1 month of the interviews. "To be free from pain"was ranked as the highest priority by the majority, and "To have staff I feel comfortable with"was ranked highest by the 6 most ill participants. A deck of cards with the 20 statements most chosen by patients receiving palliative care was created. The cards cover physical, psychological, social, existential, and practical aspects and are helpful for formulating goals of care for patients and informing the development of a core outcome set for palliative care.
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43.
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44.
  • Rydström, Ingela, et al. (författare)
  • Relations governed by uncertainty : part of life of families of a child with asthma.
  • 2004
  • Ingår i: Journal of Pediatric Nursing. - : W.B. Saunders Co.. - 0882-5963 .- 1532-8449. ; 19:2, s. 85-94
  • Tidskriftsartikel (refereegranskat)abstract
    • This study identifies what influences and characterizes family relations in families of a child with asthma. Seventeen mothers of children aged between 6 and 16 years participated in audio-taped in-depth interviews. The researchers were inspired by grounded theory in data collection and data analysis. The core category that developed was being governed by disease-engendered uncertainty. The category mothers' availability was seen in two dimensions. The first dimension, mothers' being available for the child with asthma, created two subcategories: 1. control and 2. tight bonds. The second dimension, mothers' being less available for other family members, also created two subcategories: 3. being forsaken and 4. lack of understanding. Nursing implications are discussed in relation to the findings.
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45.
  • Sand Andersen, Rikke, et al. (författare)
  • Caring as sharing. Negotiating the moral boundaries of receiving care
  • 2020
  • Ingår i: Critical Public Health. - : Informa UK Limited. - 0958-1596 .- 1469-3682. ; 30:5, s. 567-576
  • Tidskriftsartikel (refereegranskat)abstract
    • Informal caregiving is increasingly considered a health care delivery-resource within the North European welfare states. While ‘informal’ often refers to non-professional, ‘caregiving’ connotes both affective concern (caring about) and practical action (caring for). This duality of meanings, however, often refers to the one direction in which care is given. Care, we suggest, is relational and also requires that people receiving care are able to or wanting to share their needs. Informal caregiving thus requires sharing. Based on 155 semi-structured, narrative interviews with people with lung or bowel cancer, living in Denmark, Sweden or England, this paper explores how and with whom people ‘share’ when they fall ill. We approach sharing as a heuristic for reflecting on informal-caregiving, and illustrate how being cared for or asking for care are entangled with the management of social risks and notions of selfhood. We conclude that informal caregiving should explicitly be recognised as morally and sympathetically committed practices, which attend to the diversity of local moral worlds of patients, their needs and experiences.
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46.
  • Schelin, Maria E C, et al. (författare)
  • Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study
  • 2023
  • Ingår i: PLoS ONE. - 1932-6203. ; 18:6, s. 1-15
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described.OBJECTIVES: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group.METHODS: Geriatric in-patients over 65 years of age were included in the study, those with cognitive impairment were excluded. Data was collected before (baseline) and after the implementation (intervention) of the Swedish Palliative Care Guide. Patient satisfaction was evaluated two weeks after discharge with questions from a national patient survey. Health-related quality of life was measured with EQ-5D-3L and symptom burden with Edmonton Symptom Assessment Scale.RESULTS: In total, 400 patients were included, 200 in the baseline- and intervention group, respectively. Mean age was 83 years in both groups. Patient satisfaction was significantly higher in nine out of ten questions (p = 0.02-<0.001) in the intervention group compared to baseline. No differences between the groups were seen in health-related quality of life or symptom burden.CONCLUSION: A significant effect on patient satisfaction was seen after implementation of the Swedish Palliative Care Guide in geriatric care. Thus, integration of palliative care and geriatrics could be of substantial benefit in the growing population of older adults with multimorbidity and frailty.
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47.
  • Schelin, Maria Ec, et al. (författare)
  • Quality of care for the dying across different levels of palliative care development : A population-based cohort study
  • 2018
  • Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 32:10, s. 1596-1604
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND:: There is a lack of knowledge about how the provision and availability of specialized palliative care relates to the quality of dying in hospital and community-based settings. AIM:: We aimed to explore the quality of care during last week of life in relation to different levels of palliative care development. DESIGN:: We investigated access to palliative care in Southern Sweden, where one region offers palliative care in accordance with European Association for Palliative Care guidelines for capacity, and the other region offers less developed palliative care. Data on approximately 12,000 deaths during 2015 were collected from the Swedish Register of Palliative Care. The quality of care was investigated by region, and was measured in terms of assessment of oral health and of pain, and end-of-life conversation, companionship at death and artificial nutrition/fluid in the last 24 h. RESULTS:: The overall quality of care during last week of life was not consistently better in the region with fully developed palliative care compared with the less developed region. In fact, for patients dying in hospitals and community-based settings, the quality was statistically significantly better in the less developed region. The small proportion of patients who had access to specialized palliative care had superior quality of care during the last week of life as compared to patients in other care settings. CONCLUSION:: The capacity of specialized palliative care does not per se influence the quality of care during the last week of life for patients in other settings.
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48.
  • Sjöberg, Marina, et al. (författare)
  • Being acknowledged by others and bracketing negative thoughts and feelings : Frail older people's narrations of how existential loneliness is eased
  • 2019
  • Ingår i: International Journal of Older People Nursing. - : John Wiley & Sons. - 1748-3735 .- 1748-3743. ; 14:1
  • Tidskriftsartikel (refereegranskat)abstract
    • AIMS AND OBJECTIVES: The aim of this study was to describe how EL was eased, as narrated by frail older people. BACKGROUND: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life. If EL is acknowledged in the care of older people, the experience of EL can be reduced. DESIGN: In this qualitative study, we used an exploratory and descriptive design. METHODS: The study was based on 22 narrative interviews with frail older people, 76 to 101 years old, who were receiving long-term care and services. We analysed the data using conventional content analysis. RESULTS: Being acknowledged by others, that is, being the focus of others' concern, eased the experience of EL, as did encountering intimacy and having meaningful exchanges of thoughts and feelings. Further, EL was pushed into the background and eased when participants could bracket negative thoughts and feelings, that is, when they could adjust and accept the present situation, view life in the rear-view mirror, be in contact with spiritual dimensions and withdraw and distract themselves. CONCLUSION: Existential loneliness can be eased by experiencing meaningful togetherness with others and oneself when something else comes to the forefront, pushing EL to the background. Frail older peoples' opportunities to ease EL may be facilitated by health care staff (HCS) providing person-centred care and create possibilities for solitary time and meaningful togetherness. IMPLICATIONS FOR PRACTICE: If frail older people's ongoing processes of adjusting and accepting their situation are understood and confirmed by people in their environment, for example, by nurses, family and friends, the experience of living a meaningful life can be supported, which, in turn, can ease EL.
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49.
  • Sjöberg, Marina, et al. (författare)
  • Being disconnected from life : meanings of existential loneliness as narrated by frail older people
  • 2018
  • Ingår i: Aging & Mental Health. - : Routledge. - 1360-7863 .- 1364-6915. ; 22:10, s. 1357-1364
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. Method: Data were collected through individual narrative interviews with 23 people 76–101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naive reading and two structural analyses as a basis for a comprehensive understanding of EL. Result: Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as ‘being disconnected from life’. Conclusion: Illness and physical limitation affects access to the world. When being met with indifference and being unable to share one’s thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness.
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50.
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