| 1. |
- Axelsson, Lena, et al.
(författare)
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End-of-life and palliative care of patients on maintenance hemodialysis treatment : a focus group study
- 2019
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 18:1, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis. Methods: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data. Results: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance. Conclusions: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.
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| 2. |
- Axelsson, Lena, et al.
(författare)
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Processes toward the end of life and dialysis withdrawal Physicians' and nurses' perspectives
- 2020
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Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989. ; 27:2, s. 419-432
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Tidskriftsartikel (refereegranskat)abstract
- Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.
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| 3. |
- Axelsson, Lena, et al.
(författare)
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Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
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Tidskriftsartikel (refereegranskat)abstract
- Context. End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives. To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results. About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion. Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 4. |
- Beck, Ingela, et al.
(författare)
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Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff
- 2017
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.
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| 5. |
- Bergkvist, Karin, et al.
(författare)
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Support in the context of allogeneic hematopoietic stem cell transplantation : The perspectives of family caregivers
- 2020
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 46
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND AIM: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers' experiences of providing and receiving support during allo-HSCT.METHOD: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data.RESULTS: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health.CONCLUSIONS: Family caregivers' risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support.
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| 6. |
- Blomgren, Johanna, et al.
(författare)
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Maternal health leaders' perceptions of barriers to midwife-led care in Ethiopia, Kenya, Malawi, Somalia, and Uganda
- 2023
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Ingår i: Midwifery. - 0266-6138 .- 1532-3099. ; 124, s. 103734-
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To identify and examine barriers to midwife-led care in Eastern Africa and how these barriers can be reduced DESIGN: A qualitative inductive study with online focus group discussions and semi-structured interviews using content analysis SETTING: The study examines midwife-led care in Ethiopia, Malawi, Kenya, Somalia, and Uganda -five African countries with an unmet need for midwives and a need to improve maternal and neonatal health outcomes.PARTICIPANTS: Twenty-five participants with a health care profession background and current position as a maternal and child health leader from one of the five study countries.FINDINGS: The findings demonstrate barriers to midwife-led care connected to organisational structures, traditional hierarchies, gender disparities, and inadequate leadership. Societal and gendered norms, organisational traditions, and differences in power and authority between professions are some factors explaining why the barriers persist. A focus on intra- and multisectoral collaborations, the inclusion of midwife leaders, and providing midwives with role models to leverage their empowerment are examples of how to reduce the barriers.KEY CONCLUSIONS: This study provides new knowledge on midwife-led care from the perspectives of health leaders in five African countries. Transforming outdated structures to ensure midwives are empowered to deliver midwife-led care at all healthcare system levels is crucial to moving forward.IMPLICATIONS FOR PRACTISE: This knowledge is important as enhancing the midwife-led care provision is associated with substantially improved maternal and neonatal health outcomes, higher satisfaction of care, and enhanced utilisation of health system resources. Nevertheless, the model of care is not adequately integrated into the five countries' health systems. Future studies are warranted to further explore how reducing barriers to midwife-led care can be adapted at a broader level.
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| 7. |
- Butler, Éile, et al.
(författare)
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A pilot study investigating lactic acid bacterial symbionts from the honeybee in inhibiting human chronic wound pathogens
- 2016
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Ingår i: International Wound Journal. - Oxford : Blackwell Publishing. - 1742-4801 .- 1742-481X. ; 13:5, s. 729-37
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Tidskriftsartikel (refereegranskat)abstract
- Treatment and management of chronic wounds is a large burden on the health sector and causes substantial suffering for the patients. We believe that 13 lactic acid bacteria (LAB) symbionts isolated from the honey crop of the honeybee are important players in the antimicrobial action of honey, by producing antimicrobial substances and can be used in combination with heather honey as an effective treatment in wound management. A total of 22 patients with chronic ulcers were included; culture-dependent and molecular-based (MALDI-MS and 16S rRNA gene sequencing) techniques were used to identify bacteria from chronic wounds. These clinical isolates were used for in vitro antimicrobial testing with standardised viable LAB and sterilised heather honey mixture. Twenty of the patients' wounds were polymicrobial and 42 different species were isolated. Patient isolates that were tested in vitro were inhibited by the LAB and honey combination with inhibitory zones comparable with different antibiotics. LAB and heather honey in combination presents a new topical option in chronic wound management because of the healing properties of honey, antimicrobial metabolite production from the LAB and their bactericidal effect on common chronic wound pathogens. This new treatment may be a stepping stone towards an alternative solution to antibiotics.
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| 8. |
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| 9. |
- Bylund-Grenklo, Tove, et al.
(författare)
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Self-injury in youths who lost a parent to cancer : nationwide study of the impact of family-related and health-care-related factors
- 2014
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Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 23:9, s. 989-997
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent.METHODS: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care.RESULTS: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury.CONCLUSION: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children. Copyright © 2014 John Wiley & Sons, Ltd.
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| 10. |
- Bökberg, Christina, et al.
(författare)
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Until death do us part : Adult children's perspective of their parents' transition from living at home to moving into a nursing home and the time after death
- 2021
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Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person.METHODS: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis.RESULTS: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin.CONCLUSION: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped.TRIAL REGISTRATION: Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016.
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