| 1. |
- Brännström, Margareta, et al.
(författare)
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Living with severe chronic heart failure in palliative advanced home care.
- 2006
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 5:4, s. 295-302
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Living with severe chronic heart failure (CHF) in palliative care has been little studied. AIM: The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives. METHODS: Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. RESULTS: Meaning of living with severe CHF in palliative advanced home care emerged as 'knocking on death's door' although surviving. The course of the illness forces one to live a 'roller coaster life,' with an ongoing oscillation between ups and downs. Making it through the downs breeds a kind of confidence in one's ability to survive and the will to live is strong. Being offered a safety belt in the 'roller coaster' by the palliative advanced home care team evokes feelings of security. CONCLUSIONS: Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one's imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home.
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| 2. |
- Alvariza, Anette, et al.
(författare)
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Family members' experiences of integrated palliative advanced home and heart failure care : a qualitative study of the PREFER intervention
- 2018
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Ingår i: Palliative & Supportive Care. - New York : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:3, s. 278-285
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.
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| 3. |
- Andersson, Sofia, et al.
(författare)
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Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes
- 2018
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Ingår i: Scandinavian Journal of Caring Sciences. - Hoboken : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 32:1, s. 299-308
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways.DESIGN: A descriptive qualitative study.OBJECTIVE: The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes.METHODS: Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis.RESULTS: Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment.CONCLUSION: The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement.
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| 4. |
- Andersson, Sofia, et al.
(författare)
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End-of-life care in residential care homes : a retrospective study of the perspectives of family members using the VOICES questionnaire
- 2017
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 31:1, s. 72-84
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care.OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members.DESIGN: A retrospective survey design.METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used.RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old.CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.
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| 5. |
- Andersson, Sofia, 1972-, et al.
(författare)
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End-of-life discussions in residential care homes improves symptom control : a national register study
- 2021
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.OBJECTIVE: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.METHODS: All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.RESULTS: The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.CONCLUSION: The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.
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| 6. |
- Andersson, Sofia, 1972-, et al.
(författare)
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Factors Associated With Symptom Relief in End-of-Life Care in Residential Care Homes: A National Register-Based Study
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 55:5, s. 1304-1312
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Tidskriftsartikel (refereegranskat)abstract
- Context. Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.& para;& para;Objectives. The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care.& para;& para;Methods. The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N 22,855). Univariate and multiple logistic regression analyses were conducted.& para;& para;Results. Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety.& para;& para;Conclusion. Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 7. |
- Andersson, Sofia, 1972-, et al.
(författare)
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Family members' experiences of care of the dying in residential care homes where the Liverpool Care Pathway was used
- 2018
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Ingår i: International Journal of Palliative Nursing. - London : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 24:4, s. 194-202
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Tidskriftsartikel (refereegranskat)abstract
- Background: Residential care homes (RCHs) are increasingly becoming a common place of death for older people. Aim: The aim of this study was to describe family members' experiences of care of the dying in RCHs where the Liverpool care pathway for the dying patient was used. Methods: This study had a descriptive qualitative study design. Fifteen (n=15) individual interviews were analysed using qualitative content analysis. Results: The analysis resulted in three themes: being confident in a familiar and warm atmosphere, being involved vs not being involved in end-of-life (EoL) care, and being consoled by witnessing the health professional's endeavour to relieve suffering. Significance of results: The results indicated that taking part in a care plan seems to increase family members' feelings of involvement in EoL care. This study also highlights the family members' needs for increased possibilities for EoL discussions with the GP.
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| 8. |
- Andersson, Sofia, et al.
(författare)
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Translation, Cultural Adaptation, and Content Validation of the Palliative Care Self-Efficacy Scale for Use in the Swedish Context
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:3
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Tidskriftsartikel (refereegranskat)abstract
- The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and content-validation process of the PCSE scale. In this study, forward and backward translations, pretesting including an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rated items on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcare professionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated and approved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy in palliative care in a Swedish care context. Further research using psychometric tests is required.
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| 9. |
- Andersson, Sofia, 1972-
(författare)
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Vård i livets slutskede på särskilt boende för äldre personer : närstående och vårdpersonals skattade och berättade erfarenheter
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund I Europa, blir det allt vanligare att äldre personer dör på särskilt boende i stället för på sjukhus. Särskilda boenden spelar därför en viktig roll när det gäller vård i livets slutskede. Målet med palliativ vård för personer med livshotande sjukdom och deras närstående är att öka livskvaliteten och lindra lidande. Strukturerade vårdplaner såsom Liverpool Care Pathway for care of the dying (LCP) kan vara ett sätt att öka vårdkvaliteten. Det saknas dock forskning om vård i livets slutskede på särskilda boenden när en strukturerad vårdplan har använts.Syfte Det övergripande syftet med avhandlingen var att beskriva vård i livets slutskede på särskilt boende för äldre personer utifrån närstående och vårdpersonals skattade och berättade erfarenheter.Metod Avhandlingen baseras på två kvantitativa (I, II) och två kvalitativa (III, IV) studier. Studie I baseras på frågeformuläret Views of Informal Carers – Evaluation of Services (VOICES) som har besvarats av närstående (n = 189) efter att en anhörig har dött. Data har därefter analyserats med beskrivande och jämförande statistik. Studie II baseras på data om alla förväntade dödsfall (n = 22 855) som registrerats i Svenska palliativregistret (SPR). Dödsfallsenkäten har besvarats av vårdpersonal och svaren har sedan analyserats med beskrivande statistik och univariat och multipel logistisk regressionsanalys. Studie III baseras på fokusgruppsintervjuer och enskilda intervjuer med vårdpersonal. Studie IV baseras på enskilda intervjuer med närstående. Data från studie III och IV har analyserats med hjälp av kvalitativ innehållsanalys.Resultat Resultatet i studie I visar att majoriteten av de närstående skattade att den äldre personen fick tillräcklig hjälp såväl med personlig vård (78,5 %) som med sjukvård (93,0 %) de sista tre dagarna i livet. De närstående (86,2 %) rapporterade att de var informerade om att det var sannolikt att den äldre personen skulle avlida och majoriteten (94,1 %) av de äldre hade avlidit på önskad plats. Resultatet visade dock på hög förekomst av smärta (46,5 %) och andnöd (55,9 %). Det var ingen skillnad mellan åldersgrupperna när det gällde smärta men de äldre < 85 år hade signifikant högre förekomst av andnöd (70,6 %) jämfört med de äldre äldre, ≥ 85 år, (47,5 %). De äldre, < 85 år, hade signifikant oftare symtomlindring för andnöd (53,1 %) jämfört med äldre äldre, ≥ 85 år, (31,8 %).Resultatet i studie II visar hög förekomst av smärta (68,8 %) och ångest (44,0 %). Faktorer associerade med symtomlindring av smärta, illamående, ångest och andnöd var dels att validerat smärtskattningsinstrument hade använts, dels att munhälsan var bedömd. Starkast samband var det mellan symtomlindring av tre symtom (smärta, andnöd och ångest) och att injektioner var förskrivna vid behov.Resultatet i studie III visar att vårdpersonalen upplevde sig tryggare efter implementeringen av LCP genom att de hade fått ett gemensamt förhållningssätt, kände stöd att skräddarsy vården utifrån den döende personens individuella behov, kände stöd att involvera närstående i beslut och i vården samt hade blivit mer medvetna om vårdmiljön.Resultatet i studie IV visar att närstående upplevde sig tryggare i en välbekant och varm atmosfär, att vara kontra inte vara involverad i vård i livets slutskede och att bli tröstade genom att bevittna vårdpersonalens strävan att lindra lidande.Konklusion Resultatet från studierna i den här avhandlingen pekar på hög vårdkvalitet i livets slutskede på särskilt boende genom god omvårdnad, men resultatet pekar också mot förekomst av inadekvat symtomlindring och hög förekomst av smärta, andnöd och ångest de sista dagarna i livet. Det framkom ett tydligt samband mellan ordinerade injektioner vid behov och symtomlindring av smärta, illamående och ångest. Resultatet indikerar även vikten av att använda smärtskattningsinstrument och göra munhälsobedömningar för symtomlindring vid vård i livets slutskede. Således kan ett sätt att öka vårdkvaliteten för döende personer vara att det finns ordinerade injektionsläkemedel vid behov mot vanliga symtom, att använda validerade smärtskattningsinstrument och att göra munhälsobedömningar. Det framkom också att användandet av en standardiserad vårdplan såsom LCP kan vara ett sätt att förbättra vården för de äldre personerna i livets slutskede. Såväl vårdpersonalen som de närstående upplevde stöd av den struktur för bedömningar och vårdaktiviteter som LCP ger. Vårdpersonalen upplevde också stöd i att involvera närstående i vården och i vårdrelaterade beslut.
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| 10. |
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