| 1. |
- Ahlström, Gerd, et al.
(författare)
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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
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 21
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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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| 2. |
- Beck, Ingela, et al.
(författare)
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Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care : A qualitative focus group study
- 2023
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Ingår i: Nursing Open. - : Wiley-Blackwell Publishing Ltd. - 2054-1058. ; 10:12, s. 7639-7649
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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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| 3. |
- Bernhardson, Britt-Marie, et al.
(författare)
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Sensations, symptoms, and then what? : Early bodily experiences prior to diagnosis of lung cancer
- 2021
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:3
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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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| 4. |
- Birgisdóttir, Dröfn, et al.
(författare)
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A novel care guide for personalised palliative care – a national initiative for improved quality of care
- 2021
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20, s. 1-12
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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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| 5. |
- Dalhammar, Karin, et al.
(författare)
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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
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889. ; 63
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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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| 6. |
- Dalhammar, Karin, et al.
(författare)
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Symptoms, problems and quality of life in patients newly diagnosed with oesophageal and gastric cancer - a comparative study of treatment strategy
- 2022
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Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 22, s. 1-14
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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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| 7. |
- Hedman, Christel, et al.
(författare)
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Dying during the COVID-19 Pandemic in Sweden : Relatives' Experiences of End-of-Life Care (the CO-LIVE Study)
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601. ; 19:23
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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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| 8. |
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| 9. |
- Olsson Möller, Ulrika, et al.
(författare)
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A Reduced Deck of Conversation Cards of Wishes and Priorities of Patients in Palliative Care
- 2022
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Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams and Wilkins Ltd.. - 1522-2179 .- 1539-0705. ; 24:3, s. 175-180
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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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| 10. |
- Sand Andersen, Rikke, et al.
(författare)
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Caring as sharing. Negotiating the moral boundaries of receiving care
- 2020
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Ingår i: Critical Public Health. - : Informa UK Limited. - 0958-1596 .- 1469-3682. ; 30:5, s. 567-576
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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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| 11. |
- Schelin, Maria E C, et al.
(författare)
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Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study
- 2023
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Ingår i: PLoS ONE. - 1932-6203. ; 18:6, s. 1-15
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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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| 12. |
- Sjöberg, Marina, et al.
(författare)
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Existential aspects documented in older people’s patient records in the context of specialized palliative care : a retrospective review
- 2022
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Ingår i: BMC Health Services Research. - : BioMed Central Ltd.. - 1472-6963. ; 22:1, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- Background: Documentation of older people’s end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care. Methods: Data were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis. Results: The notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients’ autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found. Conclusions: Existential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people’s patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients’ thoughts and concerns may remain unknown to healthcare professionals.
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| 13. |
- Tranberg, Mattias, et al.
(författare)
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Co-afflicted but invisible : A qualitative study of perceptions among informal caregivers in cancer care
- 2021
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Ingår i: Journal of Health Psychology. - : SAGE Publications. - 1359-1053 .- 1461-7277. ; 26:11, s. 1850-1859
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Tidskriftsartikel (refereegranskat)abstract
- This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one’s own needs, assuming the role of project manager, and losing one’s sense of identity. Together they form the framing theme: being co-afflicted. The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.
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| 14. |
- Wihlborg, Christel, et al.
(författare)
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Ovärdig vård i livets slutskede – verklighetens palliativa vård?
- 2023
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Ingår i: Lakartidningen. - 0023-7205. ; 120
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Tidskriftsartikel (refereegranskat)abstract
- En ökad kunskap och medvetenhet i vården och i samhället om palliativa vårdbehov skulle ge våra medborgare en bättre och tryggare tillvaro i livets slutskede.I den vård som bedrivs när livet närmar sig sitt slut saknas ofta – planering för vården i livets slutskede trots multisjuklighet och hög ålder– brytpunktssamtal eller informerande samtal med närstående – dokumentation av patienters behov, önskemål eller prioriteringar under livets sista månader.Under vård i livets slutskede görs för ofta– röntgenundersökningar, provtagningar och andra medicinska utredningar med oklart värde kort tid före döden– oproportionerligt mycket dokumentation av medicinsk information.
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