| 1. |
- Beck, Ingela, et al.
(författare)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. The Integrated Palliative care Outcome Scale (IPOS) is one such measure, capturing clinically important physical, psychological, social, and existential aspects of patients’ palliative care needs. When patients are unable to complete the IPOS questionnaire themselves with or without assistance, a staff version is also available. Aim: To translate and culturally adapt the IPOS Patient and Staff versions for use in the Swedish context. Method: The process comprised forward and backward translations, cultural adaptation, and expert group reviews. To validate the resulting Swedish version of IPOS, cognitive interviews were conducted with 13 patients and 15 staff from various care contexts. Preliminary results: The Swedish expert group changed some words and grammar due to minor discrepancies in the back translation process. The participants in the cognitive interviews responded positively overall to the questionnaire. Deteriorating health and not having Swedish as the native language did not cause problems in completing the questionnaire. After the first round of cognitive interviews, problematic questions and answer options were rephrased, and redundant text was deleted. Conclusion: The Swedish IPOS (Patient and Staff versions) has been validated linguistically and culturally, and is now available for clinical use. The next final step in the validation process will be to test the psychometric performance of the Swedish questionnaires.
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| 2. |
- Brännström, Margareta, et al.
(författare)
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Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study
- 2016
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 30:1, s. 54-63
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Tidskriftsartikel (refereegranskat)abstract
- Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate=-2.46; 95% confidence interval=-4.43 to -0.49) and nausea (estimate=-1.83; 95% confidence interval=-3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate=-0.47; 95% confidence interval=-0.85 to -0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.
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| 3. |
- Böling, Susanna, et al.
(författare)
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Rethinking Consultation - Investigating the Perceived Work Models of a Palliative Consultation Team
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO38. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Previous research has shown that palliative consultation in hospital contexts sometimes face multifaceted challenges. Possibly creat- ing barriers between the consulting team and patients in need of palliative care. Hence, there is a need to consider how we implement and perform palliative consultation to inform future initiatives. This study is part of an ongoing project with the aim to analyse the discourse around implement- ing palliative care in a hospital context. Aim: The aim of this study was to identify and analyse various work models applied in a hospital context by a palliative consultation team. Method: Repeated focus group discussions with a palliative consultation team and its managers. A total of six focus group discussions were held from April 2016 to June 2017. The focus groups were audio recorded and transcribed verbatim. The data was read and analysed; identifying and categorising different work models. Result: According to what was expressed in the focus groups there were variations in how the consultation team operated in different hospital units and wards. Consulting as a team, consisting of a nurse, social worker and physician, was emphasised. One of the significant features was that they visited several wards on a weekly basis without receiving formal referrals beforehand. Although varying in form, the visits shared the function of being a forum for the wards to raise questions regarding palliative care relating to specific patients with palliative needs. Furthermore, during the introduction of consultation in some of the wards, the consultation team chose to designate time where a nurse from the team were present in the ward and among other things; identified patients with palliative care needs together with the ward staff and paved the way for the weekly palliative consultation.
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| 4. |
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| 5. |
- Diffin, Janet, et al.
(författare)
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Person-Centred Care: Principles and Practice Barriers (oral presentation). In: Enabling Person-Centred Care for Palliative Care Patients and Their Informal Carers: Definitions, Models of Practice and Implementation; invited session (Gunn Grande & Gail Ewing, moderators)
- 2019
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Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract PS16. Palliative Medicine, vol. 33, issue 1. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Aim: Barriers to the implementation of person-centred care within pal- liative care practice have been identified for patients and family carers. A shared understanding of (i) the principles of person-centred care, and (ii) how to successfully implement person-centred interventions is there- fore required. This paper aims to to define the key principles of person- centred care and identify barriers and enablers to implementation success within palliative care practice. Methods: This paper brings together the international evidence on person-centred care, and reviews the enablers and barriers to imple- mentation within palliative care practice. It will draw on the experi- ences of the development of person-centred care practice and the implementation of the Carer Support Needs Assessment Tool inter- vention, a person-centred process of assessment and support for fam- ily carers. Results: Person-centred care is characterised by practitioners initiat- ing, working through and safeguarding a partnership ‘with’ patients and/or family carers. As such, a change in practice from a practi- tioner-led approach, to one which is led by a patient/family carer is often required. Implementation barriers at the individual level include viewing a person-centred approach as an ‘add-on’ to existing practice, and at the organisational level include a lack of managerial support and protected time. Training is therefore required for the individual practitioner to help them integrate this approach into their everyday practice, and for the organisation to ensure adequate prep- aration, and the establishment of a strategy to support implementa- tion. A team of practitioners within the organisation is needed to drive this implementation planning and ensure organisational readi- ness for change. Conclusions: The evidence presented provides vital lessons learned for implementation of person-centred interventions for patients or family carers within palliative care practice.
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| 6. |
- Groeneveld, E. Iris, et al.
(författare)
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Funding models in palliative care : Lessons from international experience
- 2017
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 31:4, s. 296-305
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Forskningsöversikt (refereegranskat)abstract
- Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: • Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. • Funding is frequently characterised as a mixed system of charitable, public and private payers. • The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
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| 7. |
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| 8. |
- Hamdan Alshehri, Hanan, et al.
(författare)
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Adaptation of a Palliative Care Approach in the Context of Intensive Care: A Systematic Literature Review
- 2019
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Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P02-385. Palliative Medicine, vol. 33, issue 1. - : SAGE Publications.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background Palliative care is assumed to be an integral part of care in Intensive Care Units (ICU), yet, research still indicates lack knowledge about how to adapt, integrate and adopt palliative care in curative focused contexts such as in intensive care. Aim To identify factors influencing the integration of a palliative care approach in the context of ICU. Method A systematic review based on quantitative and qualitative studies using a thematic synthesis of the articles was performed. The following search term were used: Implementation, palliative care and ICU. In total 1843 articles were screened, and 25 articles were eligible for this review. Result: The findings show that the influencing factors for integrating a palliative care approach are multifaceted. Themes were identified; facilitators and barriers for implementation and adaptation on organizational level (facilitating policies and environmental support, care pathways, prognostication , multidisciplinary team, training and education) and interpersonal level (communication conflict, emotional and spiritual support, person-centred care and patient and family involvement). Conclusion To adopt a palliative care approach into the ICU setting, the integration process requires adaption of organizational support and personal beliefs and attitudes within the entire multi-professional team including the manager as well as patient and family.
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| 9. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing Students’ Attitudes toward Caring for Dying Persons - Development during Nurse Education.
- 2016
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Ingår i: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background and aim: Most nurses will care for dying patients in their work and nursing education need to prepare students for this task. The attitudes toward dying and death, and communication with patients and families are important issues in palliative care education. The aim was to describe nursing students’ attitudes toward caring for dying patients during undergraduate education, factors influencing changes in attitudes, and how prepared students feel to perform end of life care. Design and methods: This is a longitudinal study exploring the development of nursing students’ attitudes to care for dying patients with the questionnaire Frommelt Attitude Toward Care of the Dying Scale (FATCOD) first, at the beginning of their education (T1), second, at the beginning of the second year (T2) and finally, at the end of the third year of education (T3). FATCOD is a 30 item questionnaire exploring attitudes to care for dying patients; items are rated on a five-point Likert scale. Total FATCOD score, all items summated ranging from 30 to 150, for T1, T2 and T3 was analyzed with ANOVA. Length of theoretical and presence of practical palliative care education were hypothesized to influence changes in attitudes. Students also evaluated support and preparation from education. At all three occasions, 117 nursing students from six universities in Sweden participated. Results and interpretation: The total FATCOD increased from 126 to 132 from T1 to T3. Theoretical palliative care education became significant predictor of changes in attitudes towards caring for dying patients in that five weeks education better predicted changes in attitudes than three weeks. Students with five weeks theoretical palliative care education also felt more prepared and supported by the education to take care of a dying patients. Students did not feel prepared to take care of a dead body or meet families. Although nursing students’ attitudes increased, they need more preparation in palliative care.
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| 10. |
- Henoch, Ingela, 1956, et al.
(författare)
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The 6S Dialogue Tool to Facilitate Person-centered Palliative Care
- 2019
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Ingår i: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (refereegranskat)abstract
- Background: Palliative care must be planned in accordance with patients’ needs, beliefs and preferences. The 6S person-centered palliative care model aims to co-create care together with patient and family in order to achieve good quality palliative care and a peaceful death for patients. The model includes six concepts that will facilitate to plan a person-centered care for patients in palliative care. The concepts are Self-image, Symptom relief, Self-determination, Social relationships, Synthesis, and Strategies. The 6S Dialogue Tool was elaborated to concretize the concepts. Aim: To explore if the 6S Dialogue Tool covers the meaning of the S-concepts in the 6S person-centered palliative care model. Methods: This is a qualitative study where data was collected with structured questions and patients responded in an open-ended format to the 15 questions in the 6S Dialogue Tool. Forty-six patients in palliative care services in Sweden responded to the 6S Dialogue Tool from May 2015 to August 2016. Responses were analyzed with qualitative content analysis. Results: Six categories related to the 6S concepts were formulated: Selfimage was illustrated of Maintaining everyday life, Symptom relief was related to Challenges in everyday life, Self-determination concerned Maintaining control, Social relations was illustrated by Maintaining selected relations, Synthesis was related to Appraisal of life, and Strategies was illustrated by Appraisal of future. Conclusion: The responses to the 6S Dialogue Tool questions illuminated the intent and meaning of the 6S-concepts. The 6S Dialogue Tool questions are suitable for obtaining patients’ preferences and could be used as an approach in palliative care. Nurses should integrate both 6S-concepts and questions in their approach to obtain the patient’s own view of the situation and make it possible to co-create palliative care in dialogue with the patient and improve the possibilities for patients to have an appropriate death.
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| 11. |
- Holm, Maja, et al.
(författare)
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Measurement Properties of the Anticipatory Grief Scale in a Sample of Family Caregivers in the Context of Palliative Care
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract FC53. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Anticipatory Grief Scale (AGS) consists of 27 items and was developed to measure grief before the death of a loved one. Although it was originally developed to be used in the context of demen- tia, the instrument is relevant in palliative care where family caregivers often face a complex and difficult situation before the patient’s death. Because family caregivers with high levels of anticipatory grief might have need for more support both during ongoing palliative care and in bereavement, it is important to use valid instruments to measure grief reactions in anticipation of the patient’s death. Aim: The aim was to evaluate the measurement properties of the AGS in a sample of family caregivers in palliative care. Methods: In this psychometric study, data were collected in the context of ongoing palliative care and 270 family caregivers were included in the study. The family caregivers completed a questionnaire, including the AGS and demographic questions. The factor structure (construct validity) of the scale was evaluated using exploratory factor analysis for ordinal responses. Ordinal alpha (α) was used to estimate internal consistency. Results: The results of the exploratory factor analysis suggested that there were measurement problems and inconsistencies concerning the original AGS. Further analysis supported that the number of items should be reduced from 27 to 13 items. Analysis of the remaining items sug- gested a two-factor solution. The two dimensions captured the Behavioral reactions and Emotional reactions of grief in family caregivers in pallia- tive care. Internal consistency was satisfactory for both scales, α=0.83 and α=0.84 respectively. Conclusions: This study resulted in a revised 13 item version of the AGS, including two dimensions. The instrument appears to be promising for use in palliative care and in research but the measurement properties of the revised AGS needs to be confirmed in further studies. Funding This study was supported by the Swedish Cancer Society.
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| 12. |
- Holm, Maja, et al.
(författare)
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Measurement Properties of the Texas Revised Inventory of Grief in a Sample of Bereaved Family Caregivers
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO121. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Texas Revised Inventory of Grief (TRIG) is a well- used instrument designed to measure the intensity of post-loss grief. It consists of two subscales; Past Behaviours involves thinking back to the time just after a loved one’s death and Present Feelings focuses on the current situation. The two subscales consist of 8 and 13 items respec- tively and lower scores indicate more intense grief. Because family car- egivers in palliative care may be in need of support during bereavement, the TRIG could be an important instrument to measure their grief reac- tions. Hence it needs to be validated for further use in palliative care. Aim: The aim was to evaluate measurement properties of the TRIG in a sample of bereaved Swedish family caregivers. Methods: In this psychometric study, the TRIG was translated to Swedish according to standard principles. Data were collected from 129 bereaved family caregivers whose loved ones had been enrolled in palliative care units. The family caregivers completed the TRIG and demographic ques- tions six months after the death of the patient. Separate exploratory factor analyses for ordinal responses were used to evaluate the factor structure (i.e. construct validity) for each subscale. Ordinal alpha (α) was used to estimate internal consistency. Results: The exploratory factor analyses showed that both the Past Behaviours and Present Feelings measure one underlying construct, sup- porting construct validity. Internal consistency was satisfactory for both scales, α=0.92 and α=0.95 respectively. Conclusions: The results show that the two subscales of the TRIG Past Behaviours and Present Feelings are unidimensional, i.e., measuring one underlying construct. Hence, the two subscales could be used in palliative care after the patient’s death in order to capture both the past and current levels of grief in family caregivers. However, it is also necessary to con- tinue validating the TRIG in a larger sample. Funding This study was supported by the Swedish cancer society.
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| 13. |
- Hommerberg, Charlotte, 1960-, et al.
(författare)
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Rendering the ungraspable graspable : the use of metaphors in Swedish palliative cancer care
- 2016
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 30:6, s. NP364-NP364
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Good communication is of utmost importance in all forms of cancer care and especially so in the palliative context. To render the ungraspable graspable, metaphors are frequently used drawing on their capacity to capture the intangible in terms of more familiar experiences. For instance, to die from cancer can be described as ’coming to the end of a life journey’ or ’losing a battle’. Metaphors are largely language and culture specific. Today’s increasingly multicultural societies require particular awareness in order to achieve dignified, individualized palliative cancer care. This project aims to strengthen the scientific foundation for the use of metaphors in Swedish palliative cancer care. A secondary aim is to compare the use of metaphors in Sweden and the UK in order to reveal differences and similarities. Textual data are collected froma) internet-based blogs, where patients write about their illness-related emotions and experiences while being in palliative care, and fromb) interviews with patients, family and health care professionals, where the focus is to investigate what it means to live a dignified life in palliative care.The two sets of data are analyzed using both qualitative and quantitative linguistic methods. First, the Pragglejaz procedure, a well-established linguistic method for metaphor identification, is used in order to manually identify metaphorical expressions in the material, develop analytic categories adapted to the Swedish language data and ensure inter-rater reliability. Second, the material is approached by means of corpus linguistic methods. The combination of research methods is inspired by the UK-based MELC project. The data are currently being processed and the first results will be presented at the conference. The project is funded by The Kamprad Family Foundation, Sweden.
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| 14. |
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| 15. |
- Johnson, Miriam J, et al.
(författare)
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In response to C Walshe, ‘The state of play’
- 2017
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 31:8, s. 772-773
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Tidskriftsartikel (refereegranskat)
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| 16. |
- Karidar, Hakima, et al.
(författare)
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Interprofessional caring of children of cancer patients in palliative care –perspectives of doctors and social workers
- 2018
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 33:1, s. 129-129
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Konferensbidrag (refereegranskat)abstract
- A palliative cancer diagnosis in a parent has a major impact on many aspects of their children’s lives. Studies show that professionals do not seem to offer relatives, in general, much attention in the palliative fieldAim: To explore how doctors and social workers handle children of cancer patients in order to understand the possibilities and difficulties in supporting children in specialized palliative home care in Sweden.Method: Qualitative semi-structured interviews of five doctors and five social workers in Skane. Interview length 57-73 minutes. A detailed description of their latest working day. Sociologically inspired content analysis, inspired by Bourdieu’s theoretical concepts of capital, position, power and fieldResult: Doctors and social workers had limited contact with children to cancer patients. Meetings were an organizing structure for the working day. Due to hierarchical positions, doctors often set the agenda for interprofessional teamwork and directed the collaboration between doctors and social workers. Doctors and social workers seldom met patients’ children. Doctors only met children when information about parents’ cancer diseases was needed. Social workers were responsible for psychosocial issues, but only especially vulnerable families and their children were prioritized. Patients defined contact between professionals and children. Parents had the primary responsibility for their children. Meetings between children and professionals were conditional on parental permission. Even when permission was granted, physical meetings seldom took place. Children were often not at home when professionals visited the patient; often home visits during the day shift. Patient’s death meant sparse professional contact with children.Conclustion: Doctors and social workers were subject to the structural frame and a medical logic, which limited their interactions with children of cancer patients. The organization of the clinic facilitated exclusion of patients’ children as the focus area for professionals. Children were dependent on both their parents and professionals, who had the power to include or exclude them from the parent’s illness situation
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| 17. |
- Kelfve, Susanne, et al.
(författare)
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Is the level of education associated with transitions between care settings in older adults near the end of life? A nationwide, retrospective cohort study
- 2018
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 32:2, s. 366-375
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Tidskriftsartikel (refereegranskat)abstract
- Background: End-of-life transitions between care settings can be burdensome for older adults and their relatives. Aim: To analyze the association between the level of education of older adults and their likelihood to experience care transitions during the final months before death. Design: Nationwide, retrospective cohort study using register data. Setting/participants: Older adults (65 years) who died in Sweden in 2013 (n = 75,722). Place of death was the primary outcome. Institutionalization and multiple hospital admissions during the final months of life were defined as secondary outcomes. The decedents' level of education (primary, secondary, or tertiary education) was considered as the main exposure. Multivariable analyses were stratified by living arrangement and adjusted for sex, age at time of death, illness trajectory, and number of chronic diseases. Results: Among community-dwellers, older adults with tertiary education were more likely to die in hospitals than those with primary education (55.6% vs 49.9%; odds ratio (OR) = 1.21, 95% confidence interval (CI) = 1.14-1.28), but less likely to be institutionalized during the final month before death (OR = 0.83, 95% CI = 0.76-0.91). Decedents with higher education had greater odds of remaining hospitalized continuously during their final 2 weeks of life (OR = 1.12, 95% CI = 1.02-1.22). Among older adults living in nursing homes, we found no association between the decedents' level of education and their likelihood to be hospitalized or to die in hospitals. Conclusion: Compared with those who completed only primary education, individuals with higher educational attainment were more likely to live at home until the end of life, but also more likely to be hospitalized and die in hospitals.
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| 18. |
- Lind, Susanne, et al.
(författare)
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Implementation of evidence-based palliative care in acute care hospitals : Obstacles and opportunities as described by politicians, hospital managers and health care professionals
- 2016
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Ingår i: Palliative Medicine. - 0269-2163 .- 1477-030X. ; 30:6, s. NP300-
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Tidskriftsartikel (refereegranskat)abstract
- Background: In high income countries, such as Sweden, a large proportion of all deaths occur at hospitals which is commonly not consistent with the desire of the patient and next-of-kin. A common way to translate knowledge into clinical practice is to create practice guidelines for different levels of the health care organization. During the last years, national clinical guidelines for palliative care and guidance from the NBHW have been published for the first time in Sweden. Hence, the aim of this study was to identify perceptions of obstacles and opportunities for implementation of evidence-based palliative care in acute care hospitals, as described by local politicians, chief medical officers and health care professionals.Method: Interviews were conducted with local politicians, chief medical officers and health care professionals and analysed through a directed qualitative content method, guided by The Consolidated Framework for Implementation Research.Results: Palliative care was commonly mentioned as a comprehensive way for alleviation of patients’ suffering with the overall goal for maintaining quality of life, especially in end of life care. Palliative care at the hospital was described by the staff as characterized by sudden disease, rapid changes back and forth between life and death and difficulties to predict the outcome. The environment, the culture, poor communication and poor cooperation in the work team were described as obstacles for implementation. The informants mentioned the newly published documents as important but the knowledge about the content varied a lot. A newly formed internal group with the assignment to develop the palliative care at the clinic was emphasized by all health care professionals as a good opportunity to get support and local guidelines.Conclusion: An active process at different levels in the health care organization is important for a successful implementation of evidence-based palliative care in acute care hospitals.
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| 19. |
- Morgan, Deidre D., et al.
(författare)
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The trajectory of functional decline over the last 4 months of life in a palliative care population : A prospective, consecutive cohort study
- 2019
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 33:6, s. 693-703
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Tidskriftsartikel (refereegranskat)abstract
- Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
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| 20. |
- Morin, Lucas, et al.
(författare)
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Estimating the need for palliative care at the population level : A cross-national study in 12 countries
- 2017
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 31:6, s. 526-536
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Tidskriftsartikel (refereegranskat)abstract
- Background: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed.Aim: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries.Design: This is a cross-sectional study using death certificate data.Setting/participants: All adults (18years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand (N=4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively.Results: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs.Conclusion: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.
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| 21. |
- Morin, Lucas, et al.
(författare)
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How many older adults receive drugs of questionable clinical benefit near the end of life? A cohort study
- 2019
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 33:8, s. 1080-1090
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Tidskriftsartikel (refereegranskat)abstract
- Background: The high burden of disease-oriented drugs among older adults with limited life expectancy raises important questions about the potential futility of care.Aim: To describe the use of drugs of questionable clinical benefit during the last 3 months of life of older adults who died from life-limiting conditions.Design: Longitudinal, retrospective cohort study of decedents. Death certificate data were linked to administrative and healthcare registries with national coverage in Sweden.Setting: Older adults (>= 75 years) who died from conditions potentially amenable to palliative care between 1 January and 31 December 2015 in Sweden. We identified drugs of questionable clinical benefit from a set of consensus-based criteria.Results: A total of 58,415 decedents were included (mean age, 87.0 years). During their last 3 months of life, they received on average 8.9 different drugs. Overall, 32.0% of older adults continued and 14.0% initiated at least one drug of questionable clinical benefit (e.g. statins, calcium supplements, vitamin D, bisphosphonates, antidementia drugs). These proportions were highest among younger individuals (i.e. aged 75-84 years), among people who died from organ failure and among those with a large number of coexisting chronic conditions. Excluding people who died from acute and potentially unpredictable fatal events had little influence on the results.Conclusion: A substantial share of older persons with life-limiting diseases receive drugs of questionable clinical benefit during their last months of life. Adequate training, guidance and resources are needed to rationalize and deprescribe drug treatments for older adults near the end of life.
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| 22. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Family sense of coherence and its associations with hope, anxiety and symptoms of depression in persons with cancer in palliative phase and their family members : A cross-sectional study
- 2019
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 33:10, s. 1310-1318
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members. Aim: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members. Design: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression. Setting/participants: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden. Results: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members. Conclusion: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.
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| 23. |
- Pohlkamp, Lilian, et al.
(författare)
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Prolonged Grief is Associated with Different Factors During the Child’s Illness for Mothers and Fathers
- 2019
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Ingår i: 6th World Congress of the EAPC in Berlin. - : SAGE Publications.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The death of a child is one of the most painful events a parent may experience. Bereaved parents are known to be at an increased risk for intense and prolonged grief responses such as Prolonged Grief Disorder (PGD). More knowledge is needed to understand mothers’ and fathers’ experiences of their children’s disease trajectory and possible associations to prolonged grief in order to offer better support to grieving parents.Objective: The aims of this study were to assess symptoms of PGD in bereaved mothers and fathers and to examine possible contributing factors to parent’s grief.Methods: A Swedish population based survey including 133 mothers and 92 fathers who had lost a child to cancer 1-5 years previously. Bivariate and multiple regression analyses were conducted to assess the associations between prolonged grief and independent variables.Results: Mothers had significantly higher PGD symptom levels than fathers. Suffering of mothers was associated with their child’s pain, anxiety and with not being able to talk within the family, whereas the suffering of fathers was associated with lack of information from health care staff and with the feeling of having too much responsibility in the care of the child.Conclusions: Mothers and fathers reported differences in factors associated with their grief following the death of their child. The results suggest that mothers and fathers would benefit from different kinds of support during their child’s illness, which could be considered when developing pediatric palliative care practice.
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| 24. |
- Rejnö, Åsa, 1970, et al.
(författare)
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Communication as a key in creating dignified encounters in unexpected sudden death by stroke
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract P253. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Communication is present in all encounters in care and of importance to create a caring relation. A good relation between patients, next of kin and health care staff is crucial, not least in times of rapid changes in health and when questions about life and death are at stake such as in palliative care. The aim of this study was to illuminate communication and its meaning in unexpected sudden death with stroke as example, as experienced by next of kin and stroke team members. The design of the study is a secondary analysis of qualitative data as proposed by Heaton, from a project on unexpected sudden death by stroke. Material from four interview studies from the project with all in all twelve next of kin of patients who had died due to the acute stroke during hospital stay and twenty-seven stroke team members from stroke units were utilized. Data were analysed with qualitative content analysis according to Krippendorf and Baxter. The analysis reveals communication as the foundation for care and caring. The overarching theme foundation for dignified encounters in care is built up by six themes illuminating the meaning of communication in unexpected sudden death by stroke; creating relationship, information enabling understanding, giving ground for unanimity, personalizing the patient, preconditioning for decisions and giving and experiencing support. Communication and its meaning in unexpected sudden death as experienced by next of kin and stroke team members enables dignified encounters in care. Through the next of kin knowledge about the severely ill patient, possibility to preserve and uphold absolute dignity and dignity of identity is given, expressed through respect for the patient’s will and desire and derived through talks between carers and next of kin. Communication is one key to create dignified encounters in palliative care when unexpected sudden death occurs. It gives ground for unanimity about care and possibility to maintain and uphold dignity in care when acknowledging the next of kin familiarity with the patient. This gives ground for a person centeredness in palliative care despite the patients sever illness.
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| 25. |
- Sahlen, Klas-Göran, et al.
(författare)
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A cost-effectiveness study of person-centered integrated heart failure and palliative home care : based on a randomized controlled trial
- 2016
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 30:3, s. 296-302
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Tidskriftsartikel (refereegranskat)abstract
- Background: Previous economic studies of person-centered palliative home care have been conducted mainly among patients with cancer. Studies on cost-effectiveness of advanced home care for patients with severe heart failure are lacking when a diagnosis of heart failure is the only main disease as the inclusion criterion.Aim: To assess the cost-effectiveness of a new concept of care called person-centered integrated heart failure and palliative home care.Design: A randomized controlled trial was conducted from January 2011 to 2013 at a center in Sweden. Data collection included cost estimates for health care and the patients’ responses to the EQ-5D quality of life instrument.Setting/participants: Patients with chronic and severe heart failure were randomly assigned to an intervention (n = 36) or control (n = 36) group. The intervention group received the Palliative Advanced Home Care and Heart Failure Care intervention over 6 months. The control group received the same care that is usually provided by a primary health care center or heart failure clinic at the hospital.Results: EQ-5D data indicated that the intervention resulted in a gain of 0.25 quality-adjusted life years, and cost analysis showed a significant cost reduction with the Palliative Advanced Home Care and Heart Failure Care intervention. Even if costs for staffing are higher than usual care, this is more than made up for by the reduced need for hospital-based care. This intervention made it possible for the county council to use €50,000 for other needs.Conclusion: The Palliative Advanced Home Care and Heart Failure Care working mode saves financial resources and should be regarded as very cost-effective.
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| 26. |
- Sandsdalen, Tuva, 1971-, et al.
(författare)
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Patients’ preferences in palliative care : A systematic mixed studies review
- 2015
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 29:5, s. 399-417
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient's combined preferences for all elements that constitute palliative care.AIM:The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research.DATA SOURCES:Studies were retrieved by searching databases - the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts - from 1946 to 2014, and by hand searching references in the studies included.DESIGN:A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis.RESULTS:The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme 'Living a meaningful life' illustrated what patients strived for. The opportunity to focus on living required the presence of 'Responsive healthcare personnel', a 'Responsive care environment' and 'Responsiveness in the organization of palliative care'.CONCLUSION:The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients' preferences.
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| 27. |
- Schelin, Maria Ec, et al.
(författare)
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Quality of care for the dying across different levels of palliative care development : A population-based cohort study
- 2018
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 32:10, s. 1596-1604
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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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| 28. |
- Schenell, Ramona, 1978, et al.
(författare)
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Difficulties in the Communication about the Future - An Obstacle for Self-determination amongst Residents in Palliative Phase in Residential Care Facilities.
- 2019
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Ingår i: Palliative Medicine : A Multiprofessional Journal. - 0269-2163 .- 1477-030X.
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Konferensbidrag (refereegranskat)abstract
- Background: Residential care facilities are common places of death with a high prevalence of palliative care needs. For some residents the ability to make and execute decisions is reduced due to cognitive or physical losses. Despite that many residents do have capacity in decision making they are not always involved in planning for their own end-of-life care. Aim: To illuminate staffs’ experiences of communication in relation to the residents’ self-determination in the palliative phase. Methods: Twenty individual semi-structured interviews with registered nurses, enrolled nurses, and physicians working in residential care facilities were analyzed with qualitative content analysis. Results: Communication was described as crucial for the self-determination. Both the residents’ own abilities to communicate and the support they could receive from others when the ability was reduced were important factors. Insufficient communication within the care team with e.g. a hierarchical communication chain, fear of talking about death, and the different professions’ interpretations of the terms palliative phase, do not resuscitate (DNR), and end-of-life discussions, also affected the residents’ self-determination, resulting in lack of planning for the future. The lack of end-of-life care planning sometimes resulted in conflicts between the staff and the relatives, hospital admissions, and life prolonging treatments which was quite the opposite of what the staff believed that the residents wanted. Conclusion/discussion: Not planning for end-of life-care compromised the residents’ self-determination and left the staff and the relatives in an uneasy position, when being forced to make decisions without knowing the residents’ wishes. By implementing a palliative approach, with a focus on quality of life, early in the residents’ illness trajectories, communication about end-of-life care, both within the group of staff and between residents, relatives and staff could be facilitated.
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| 29. |
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| 30. |
- Sveen, Josefin, et al.
(författare)
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Guided internet cognitive behavioral therapy for insomnia after the loss of a child: randomized controlled trial
- 2019
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Ingår i: 6th World Congress of the EAPC in Berlin. - : SAGE Publications.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Disturbed sleep is a common problem in bereaved individuals (Buckley et al., 2012).Aims: The aim was to evaluate satisfaction with and effects of internet-delivered cognitive behavior therapy (ICBT) treatment for insomnia in parents up to 5 years after the loss of a child to cancer.Methods: Participants were 21 bereaved parents with insomnia. The parents were randomized to an intervention or a control group. The intervention was a 9-week ICBT for insomnia. The control group received a short booklet with psychoeducation on sleep via the internet. Primary outcome was symptom of insomnia and secondary outcomes were prolonged grief, depression, posttraumatic stress, grief rumination, assessed pre- and post-intervention with follow-up after 9 and 18 months. Satisfaction with treatment was assessed at post-intervention (n=7) and by telephone one month after (n=6) the intervention.Results: The intervention group improved from pre- to post-intervention with regard to symptoms of insomnia (Cohens d=1.56), however there was no significant difference between the two groups at post-measure (d=0.11) due to a large reduction also in the control group (d=1.12). At the 9 months follow-up there was a significant difference between the two groups in symptoms of insomnia (d=1.54) as well as the secondary measures (d=0.62-1.54). Of six individuals who responded by telephone, no one had experienced any negative consequences of the treatment. Some parents thought it was time-consuming. One person reported being quite dissatisfied with the treatment, although the majority of participants reported being very satisfied.Conclusion: The preliminary results, due to small sample size, indicate that the internet-delivered treatment with CBT had a positive effect on reducing insomnia as well as psychological distress in bereaved parents, short-term and long-term.
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| 31. |
- Wright, Rebecca J., et al.
(författare)
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Emergency department staff priorities for improving palliative care provision for older people : A qualitative study
- 2018
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 32:2, s. 417-425
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Emergency department-based palliative care services are increasing, but research to develop these services rarely includes input from emergency clinicians, jeopardizing the effectiveness of subsequent palliative care interventions.AIM: To collaboratively identify with emergency clinicians' improvement priorities for emergency department-based palliative care for older people.DESIGN: This was one component of an experience-based co-design project, conducted using semi-structured interviews and feedback sessions.SETTING/PARTICIPANTS: In-depth interviews with 15 emergency clinicians (nurses and doctors) at a large teaching hospital emergency department in the United Kingdom exploring experiences of palliative care delivery for older people. A thematic analysis identified core challenges that were presented to 64 clinicians over five feedback sessions, validating interview findings, and identifying shared priorities for improving palliative care delivery.RESULTS: Eight challenges emerged: patient age; access to information; communication with patients, family members, and clinicians; understanding of palliative care; role uncertainty; complex systems and processes; time constraints; and limited training and education. Through feedback sessions, clinicians selected four challenges as improvement priorities: time constraints; communication and information; systems and processes; and understanding of palliative care. As resulting improvement plans evolved, "training and education" replaced "time constraints" as a priority.CONCLUSION: Clinician priorities for improving emergency department-based palliative care were identified through collaborative, iterative processes. Though generally aware of older palliative patients' needs, clinicians struggled to provide high-quality care due to a range of complex factors. Further research should identify whether priorities are shared across other emergency departments, and develop, implement, and evaluate strategies developed by clinicians.
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