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- Alvariza, A., et al.
(author)
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Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention
- 2020
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In: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1
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Journal article (peer-reviewed)abstract
- Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
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- Holm, M., et al.
(author)
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Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care A Prospective Correlational Study
- 2017
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In: Cancer Nursing. - : Ovid Technologies (Wolters Kluwer Health). - 0162-220X .- 1538-9804. ; 40:1, s. 76-83
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Journal article (peer-reviewed)abstract
- Background: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. Objective: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. Intervention/Methods: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score <= 0 vs >= 1). Results: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Conclusions: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Implications for Practice: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.
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- Karlsson, E., et al.
(author)
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Breast cancer during follow-up and progression - A population based cohort on new cancers and changed biology
- 2014
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In: European Journal of Cancer. - : Elsevier. - 0959-8049 .- 1879-0852. ; 50:17, s. 2916-2924
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Journal article (peer-reviewed)abstract
- Background: Emerging data indicate an important role for biopsies of clinically/radiologically defined breast cancer 'recurrences'. The present study investigates tumour related events (relapses, other malignancies, benign conditions) after a primary breast cancer diagnosis. Patients and methods: The cohort includes 2102 women, representing all patients, with primary invasive breast cancer during 2000-2011 in the county of Varmland, Sweden. A comparative analysis of oestrogen receptor (ER), progesterone receptor (PR), human epidermal growth factor receptor 2 (HER2) and proliferation (Ki67) between the primary tumour and the relapse was performed and related to outcome. Results: With a mean follow-up time of 4.8 years, 1060 out of 2102 patients have had a biopsy taken after the initial breast cancer diagnosis demonstrating 177 recurrences, 93 other malignancies (colorectal, lung, skin), 40 cancer in situ (skin, breast) and 857 benign lesions. Approximately 70% (177 out of 245) of all cases of relapsed breast cancer underwent a biopsy during this time period. For patients with recurrences, ER (n = 127), PR (n = 101), HER2 (n = 73) and Ki67 (n = 55) status in both primary tumour and the corresponding relapse were determined. The discordance of receptor status was 14.2%, 39.6%, 9.6% and 36.3%, respectively. Loss of ER or PR in the relapse resulted in a significant increased risk of death (hazard ratio (HR) 3.62; 95% confidence interval (CI), 1.65-7.94) and (HR 2.34; 95% CI, 1.01-5.47) compared with patients with stable ER or PR positive tumours. The proportion of patients losing ER was bigger in the group treated with endocrine therapy alone or in combination with chemotherapy, 16.7% and 13.3%, respectively, compared with the group treated with chemotherapy alone or that which received no treatment 4.3% and 7.7%, respectively. Conclusion: Discordance of biomarkers between the primary tumour and the corresponding relapse was seen in 10-40% of the patients, adjuvant therapies seem to drive clonal selections. Patients with tumours losing ER or PR during progression have worse survival compared with patients with retained receptor expression. (C) 2014 Elsevier Ltd. All rights reserved.
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- Årestedt, Kristofer, et al.
(author)
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Palliative Care Needs in Terms of Signs, Symptoms and Health Related Quality of Life (HRQoL) among Patients with Advanced Chronic Heart Failure
- 2014
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In: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 697-697
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Conference paper (peer-reviewed)abstract
- Purpose: Despite that chronic heart failure is associated with a poor prognosis, only few patients receive palliative care. Among patients with advanced stages of heart failure, previous studies have mainly focused on solitary specific signs or symptoms and few have described the patients’ situation from a more comprehensive perspective. The aim was therefore to undertake a comprehensive description of potential palliative care needs in terms of signs, symptoms and health related quality of life (HRQoL) among patients with advanced chronic heart failure. Methods: The study included 72 patients with advanced chronic heart failure (NYHA III and IV), taken from a larger multi-centre study. The study variables included demographic data, medical and nutritional status, sleeping disordered breathing, physical activity, self-perceived symptoms and HRQoL, and cognitive function. Results: A large number of the patients scored appetite levels at increased risk for weight loss (53%), scored mild or worse depressive symptoms (47%), was short of breath in rest (43%), and had moderate or worse pain (82%). Mobility problems were common ( 72%) as well as problems conducting usual activities (33%). Problems with low physical activity according to average number of steps (2691±2022) and METs (1.0±0.2), insomnia (64%), daytime sleepiness (44%) and sleep disordered breathing (AHI ≥ 15, 56%) were common. The mean BMI was high (30.2±5.7) and 18% had albumin levels ≤ 35 (mean 38.8±3.7). Impaired cognitive functioning was also common (MMSE ≤ 27, 54%). HRQoL was in general low, but with a great individual variance (EQ-index 0.65±0.22; EQ-VAS 50.8±17.6). Conclusion: Despite that none of the participants received palliative care, this comprehensive description shows that these patients with heart failure have complex health care needs. Therefore, health professional should focus on palliative care needs earlier in the disease trajectory.
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- Årestedt, Kristofer, 1968-, et al.
(author)
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Symptom relief and palliative care during the last week of life among patients with heart failure
- 2017
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In: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 16, s. S58-S59
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Journal article (other academic/artistic)abstract
- Background: Heart failure is a disease with high morbidity, mortality and physical and psychological burden. Patients with heart failure have symptoms as severe and distressing as those of cancer patients. Likewise, the knowledge about care oriented towards palliation provided close to death is sparse.Purpose: To describe symptom prevalence and key aspects of palliative care the last week of life for patients with heart failure, from the perspective of health care professionals.Methods: Data was taken from the Swedish Register of Palliative Care, 2011 and 2012 (n=3981). Inclusion criteria were; heart failure as underlying cause of death (ICD-10; I50.0, I50.1 & I50.9), expected death and 18 years or older. During this period, the register covered 58% of all deaths in Sweden. Variables were described using univariate statistics.Results: The sample consisted of 3981 patients (63% women) with a mean age of 88.1 (SD=7.1) years. The most common reported symptom was pain (62%), followed by rattles (51%), anxiety (39%), shortness of breath (29%), confusion (25%), and nausea (11%). Symptom relief was most prominent for pain and anxiety. Still, 25% and 38% respectively were partly or not relieved. Poorer relief was found for patients suffering shortness of breath, nausea and rattles. More than half of patients were partly or not reviled, 61%, 58% and 55% respectively. Poorest symptom relief was showed for patients with confusion, 85 % were partly or not reviled. Validated self-rating scales were seldom used to assess symptoms. Pain was more often assessed (12%) than other symptoms (8%). Two third of the patients (72%) and almost half of family members (39%) did not have an end of life discussions with a physician. One fifth (17%) died alone without family members or health care professionals present.Conclusions: Our findings indicate that the palliative care is inadequate for patients with heart failure during their last week of life. Symptom management needs to be improved, for example by structured use of validated symptom rating scales. End of life discussions needs to be improved, both for patients and family members.
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