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1.
  • Hjelmfors, Lisa, et al. (författare)
  • Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals
  • 2020
  • Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 19:1, s. 1-14
  • Tidskriftsartikel (refereegranskat)abstract
    • Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients' and family members' preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.
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2.
  • Gustafsson, Anna W, et al. (författare)
  • Coping by metaphors : The versatile function of metaphors in blogs about living with advanced cancer
  • 2020
  • Ingår i: Medical Humanities. - London : BMJ Publishing Group Ltd. - 1468-215X .- 1473-4265. ; 46:3, s. 267-277
  • Tidskriftsartikel (refereegranskat)abstract
    • Living with a life-limiting cancer illness can entail a turmoil of feelings such as constant fear of loss, suffering and dying. Because patients live longer with life-limiting illness, there is a need for enhanced understanding of how people make sense of and cope with the complicated aspects that this life situation brings on. In this article, we explore how bloggers with advanced cancer use metaphors as ways of making sense of their experiences. Our study is theoretically grounded in Conceptual Metaphor Theory, where metaphors are seen as a powerful phenomenon that both reflects and affects our thinking. The data consist of a corpus of blogs written in Swedish by individuals with advanced cancer, and the findings from our linguistic metaphor analysis are consistently interpreted against the backdrop of literature on coping. Our study thus highlights the intersection of linguistic metaphor analysis and psychological theories of coping by illustrating the many and complex functions metaphors can have as part of sense-making processes. Our hermeneutic approach enables us to show some differences among the three most pervasive metaphor domains in our material, battle, journey and imprisonment: the journey and imprisonment domains are more flexible than the battle domain in terms of the different kinds of coping strategies that are actualised by the bloggers’ use of metaphors. One particular finding from our analysis is the way in which the bloggers make use of metaphors to compartmentalise experiences and emotions. Our contention is that careful attention to the metaphors used by patients can improve communication in healthcare and enhance understanding of the complex role language use plays in coping processes more generally. By highlighting the relation between metaphor use and coping, our analysis also provides a way to discuss coping strategies based on the patient’s own use of language.
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3.
  • Hjelmfors, Lisa, et al. (författare)
  • Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List
  • 2022
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:8
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals' perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.
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4.
  • Hjelmfors, Lisa, et al. (författare)
  • “I was told that I would not die from heart failure” : Patient perceptions of prognosis communication
  • 2018
  • Ingår i: Applied Nursing Research. - : Elsevier. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim and objectives To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.BackgroundProfessionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.MethodsAn inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.Findings Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.Conclusion This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure. 
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5.
  • Hjelmfors, Lisa, et al. (författare)
  • Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care
  • 2018
  • Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.
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6.
  • Hommerberg, Charlotte, 1960-, et al. (författare)
  • Battle, Journey, Imprisonment and Burden : patterns of metaphor use in blogs about living with advanced cancer
  • 2020
  • Ingår i: BMC Palliative Care. - : Springer Nature. - 1472-684X. ; 19, s. 1-10
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with “Battle” and “Journey” metaphors standing out as key. Adaptation to the patient’s use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.Methods: The study is based on a dataset totaling 2 602 479 words produced some time during the period 2007–2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10 000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.Results: Our results confirm the strong foothold of “Journey” and “Battle” metaphors. “Imprisonment” and “Burden” metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.Conclusions: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with “Journey”, “Battle”, “Imprisonment” and “Burden” across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals’ capacity to identify metaphorical patterns and develop a common language grounded in the patients’ own metaphor use, which is an important requisite for person-centered palliative care.
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7.
  • Hommerberg, Charlotte, 1960- (författare)
  • Hur vi talar om cancer
  • 2017
  • Annan publikation (film/video) (populärvet., debatt m.m.)
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8.
  • Lindmark, Ulrika, 1965-, et al. (författare)
  • The use of the concept of transition in different disciplines within health and social welfare: An integrative literature review
  • 2019
  • Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 6:3, s. 664-675
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims: To continuing the quest of the concept of transition in nursing research and toexplore how the concept of transition is used in occupational therapy, oral health andsocial work as well as in interdisciplinary studies in health and welfare, between2003–2013.Design: An integrative literature review.Methods: PubMed, CINAHL, PsycINFO, DOSS, SocIndex, Social Science Citation Indexand AMED databases from 2003–2013 were used. Identification of 350 articles includingthe concept of transition in relation to disciplines included. Assessment of articlesare in accordance to Meleis’ typologies of transition by experts in each discipline.Chosen key factors were entered into Statistical Package for the Social Sciences (SPSS).Results: Meleis’ four typologies were found in all studied disciplines, except developmentin oral health. The health‐illness type was the most commonly explored,whereas in social work and in occupation therapy, situational transitions dominated.
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9.
  • Lundberg, Kristina, 1959-, et al. (författare)
  • Unifying loyalty : a grounded theory about tactical officers’ challenges when leading licensed medical personnel in combat zones
  • 2022
  • Ingår i: Journal of Military Studies. - : Sciendo. - 2242-3524 .- 1799-3350. ; 11:1, s. 1-7
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: The aim was to explore the tactical officers’ (TOs) main concerns when leading licensed medical personnel (LMP) in combat zones and how they resolved them.Methods: A classic grounded theory was chosen in order to develop a theory, which explained and conceptualized the TOs behaviors. Ten individual interviews and five informal conversations were conducted with TOs with various ranks, experienced in leading LMPs on military operations in Afghanistan, Mali and/or Aden (outside the coast of Somalia).Results: The theory unifying loyalty explains how TOs handle the challenges when leading LMP. To create loyalty TOs use four strategies: executing orders, clearing out roles, marking limits and clarifying rules and laws. These strategies can be used by two leadership styles, hierarchical and democratic.Conclusions: In order to fulfill the military duties it is essential to unify LMP in the unit, which is a challenge since LMP experience dual loyalty. The main goal for TOs is to ensure and maintain stability and do the military duties when being in combat zones and that requires using both leadership styles, depending on what the conditions in combat zones requires. 
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10.
  • Ahlström, Gerd, et al. (författare)
  • Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design : a study protocol
  • 2018
  • Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care. Methods/design: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations. Discussion: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing.
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11.
  • Alftberg, Åsa, et al. (författare)
  • Conversations about Death and Dying with Older People : An Ethnographic Study in Nursing Homes
  • 2018
  • Ingår i: Healthcare. - : MDPI. - 2227-9032. ; 6:2
  • Tidskriftsartikel (refereegranskat)abstract
    • Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.
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12.
  • Andersson, Sofia, et al. (författare)
  • Organizational readiness to implement the Serious Illness Care Program in hospital settings in Sweden
  • 2022
  • Ingår i: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 22:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background The Serious Illness Care Program (SICP) is a model developed for structured communication, identifying patients, and training physicians to use a structured guide for conversations with patients and family members. However, there is a lack of knowledge regarding the sustainable implementation of this conversation model. Therefore, the aim of this study was to identify barriers and enablers during the implementation of the SICP in hospital settings. Methods The SICP was implemented at 20 units in two hospitals in Sweden. During the implementation process, seven individual interviews and two group interviews were conducted with seven facilitators (five physicians, one behavioral therapist, and one administrator). Data were analyzed using qualitative content analysis, first inductively, and then deductively using the organizational readiness for change as a theoretical framework. Result The analysis resulted in three factors acting as enablers and eight factors acting as enablers and/or barriers during the implementation of the SICP. The three factors considered as enablers were preliminaries, identifying patients, and facilitator's role. The eight factors considered as enablers and/or barriers were broad implementation, leadership, time, confidence, building foundation, motivation to work change, motivation for training in serious illness conversations, and attitudes. Conclusion This study indicates limited readiness to implement the SICP in hospital settings due to considerable variation in organizational contextual factors, change efficacy, and change commitment. The identified enablers and barriers for implementation of the SICP could guide and support future implementations to be sustainable over time.
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13.
  • Andersson, Sofia, et al. (författare)
  • Translation, Adaptation, and Validation of the Swedish Serious Illness Conversation Guide
  • 2024
  • Ingår i: Journal of Palliative Care. - : Sage Publications. - 0825-8597. ; 39:1, s. 21-28
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To translate and adapt the Serious Illness Conversation Guide for use within the Swedish healthcare setting and examine the validity and acceptability of the Swedish Serious Illness Conversation Guide. Methods: Three rounds of cognitive interviews were conducted (T1-3); patients (T1 n = 11; T2 n = 10; T3 n = 8), family members (T1 n = 5; T2 n = 2; T3 n = 2), and healthcare professionals (T1 n = 6; T2 n = 6; T3 n = 5). The guide was iteratively adapted based on interview feedback, clinical experience, and the literature. The guide was tested on training days with physicians and nurses. Results: The Swedish Serious Illness Conversation Guide was found to be useful in supporting serious illness conversations. Clinicians reported that some questions were emotionally challenging. Explicit questions about prognosis and timing were excluded. Instead, the dual approach of "hoping for the best and preparing for the worst" was used to explore patients' thoughts about the future. Conclusions: Patients, family members, and healthcare professionals found the Swedish Serious Illness Conversation Guide to be appropriate, sensitive, and responsive to their needs. The Swedish Serious Illness Conversation Guide may facilitate a more health-promoting approach to serious illness conversations. Further research is needed to understand the impact of these conversations on person-centered and goal-concordant care.
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14.
  • Andersson, Sofia, et al. (författare)
  • Translation, Cultural Adaptation, and Content Validation of the Palliative Care Self-Efficacy Scale for Use in the Swedish Context
  • 2022
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:3
  • Tidskriftsartikel (refereegranskat)abstract
    • The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and content-validation process of the PCSE scale. In this study, forward and backward translations, pretesting including an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rated items on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcare professionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated and approved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy in palliative care in a Swedish care context. Further research using psychometric tests is required.
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15.
  • Baxter, Rebecca, 1989-, et al. (författare)
  • Core elements of serious illness conversations : an integrative systematic review
  • 2023
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Ariadne Labs' Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide.Aim: This integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG.Design: Literature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis.Results: A total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care.Conclusions: Core elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.
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16.
  • Baxter, Rebecca, 1989-, et al. (författare)
  • Patient identification for serious illness conversations : A scoping review
  • 2022
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:7
  • Forskningsöversikt (refereegranskat)abstract
    • Serious illness conversations aim to align medical care and treatment with patients' values, goals, priorities, and preferences. Timely and accurate identification of patients for serious illness conversations is essential; however, existent methods for patient identification in different settings and population groups have not been compared and contrasted. This study aimed to examine the current literature regarding patient identification for serious illness conversations within the context of the Serious Illness Care Program and/or the Serious Illness Conversation Guide. A scoping review was conducted using the Joanna Briggs Institute guidelines. A comprehensive search was undertaken in four databases for literature published between January 2014 and September 2021. In total, 39 articles met the criteria for inclusion. This review found that patients were primarily identified for serious illness conversations using clinical/diagnostic triggers, the 'surprise question', or a combination of methods. A diverse assortment of clinicians and non-clinical resources were described in the identification process, including physicians, nurses, allied health staff, administrative staff, and automated algorithms. Facilitators and barriers to patient identification are elucidated. Future research should test the efficacy of adapted identification methods and explore how clinicians inform judgements surrounding patient identification.
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17.
  • Baxter, Rebecca, 1989-, et al. (författare)
  • Perils and payoffs for patients in serious illness conversations as described by physicians : a qualitative study
  • 2024
  • Ingår i: BMJ Open Quality. - : BMJ Publishing Group Ltd. - 2399-6641. ; 13:2
  • Tidskriftsartikel (refereegranskat)abstract
    • Background The Serious Illness Care Programme was developed to promote more, better and earlier serious illness conversations. Conversations about goals and values are associated with improved experiences and outcomes for seriously ill patients. Clinicians' attitudes and beliefs are thought to influence the uptake and performance of serious illness conversations, yet little is known about how clinicians perceive the impact of these conversations on patients. This study aimed to explore physicians' perceptions regarding the impact of serious illness conversations for patients.Methods The Serious Illness Care Programme was implemented as a quality improvement project in two hospitals in Southern Sweden. Focus group evaluation discussions were conducted with 14 physicians and inductive thematic analysis was undertaken.Results The results revealed that physicians considered potential perils and optimised potential payoffs for patients when engaging in serious illness conversations. Potential perils encompassed inappropriate timing, damaging emotions and shattering hopes. Potential payoffs included reflection time, secure space, and united understandings.Conclusions Physicians depicted a balance in evaluating the perils and payoffs of serious illness conversations for patients and recognised the interrelation of these possibilities through continual assessment and adjustment.
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18.
  • Blomqvist, Marjut, 1966-, et al. (författare)
  • Enabling healthy living : Experiences of people with severe mental illness in psychiatric outpatient services
  • 2018
  • Ingår i: International Journal of Mental Health Nursing. - Richmond, VIC : Wiley-Blackwell. - 1445-8330 .- 1447-0349. ; 27:1, s. 236-246
  • Tidskriftsartikel (refereegranskat)abstract
    • It is well known that people with severe mental illness have a reduced life expectancy and a greater risk of being affected by preventable physical illnesses such as metabolic syndrome, cardiovascular disease and type 2 diabetes. There are still, however, only a few published studies focusing on what enables healthy living for this group. This study thus aimed to describe what enables healthy living among people with severe mental illness in psychiatric outpatient services. The data were collected in qualitative interviews (n=16) and content analysis was used to analyze the data. The interviews resulted in an overall theme Being regarded as a whole human being by self and others, which showed the multidimensional nature of health and the issues that enable healthy living among people with severe mental illness. Three categories emerged: (i) everyday structure (ii), motivating life events and (iii) support from significant others. The results indicate that a person with severe mental illness needs to be encountered as a whole person if healthy living is to be enabled. Attaining healthy living requires collaboration between the providers of care, help and support. Health care organizations need to work together to develop and provide interventions to enable healthy living and to reduce poor physical health among people with severe mental illness.
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19.
  • Blomqvist, Marjut, 1966-, et al. (författare)
  • Health effects of an individualized lifestyle intervention for people with psychotic disorders in psychiatric outpatient services : a two year follow-up
  • 2019
  • Ingår i: Issues in Mental Health Nursing. - Philadelphia : Taylor & Francis. - 0161-2840 .- 1096-4673. ; 40:10, s. 839-850
  • Tidskriftsartikel (refereegranskat)abstract
    • People with psychotic disorders experience to a great extent avoidable physical illnesses and early mortality. The aim of the study was to investigate the potential effects for this group of participating in a lifestyle intervention. A multi-component nurse-led lifestyle intervention using quasi-experimental design was performed. Changes in biomedical and clinical measurements, self-reported health, symptoms of illness and health behavior were investigated. Multilevel modeling was used to statistically test differences in changes over time. Statistically significant changes were found in physical activity, HbA1c and waist circumference. A lifestyle intervention for people with severe mental illness can be beneficial for increasing physical activity.
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20.
  • Blomqvist, Marjut, 1966-, et al. (författare)
  • Health risks among people with severe mental illness in psychiatric outpatient settings
  • 2018
  • Ingår i: Issues in Mental Health Nursing. - Philadelphia : Taylor & Francis. - 0161-2840 .- 1096-4673. ; 39:7, s. 585-591
  • Tidskriftsartikel (refereegranskat)abstract
    • Life expectancy is greatly reduced in patients with schizophrenia, and cardiovascular diseases are a leading cause of mortality. The aim of this cross-sectional study was to investigate the prevalence of overweight, obesity, and cardiovascular disease (CVD) risk and to investigate the relationships between self-rated health, sense of coherence, CVD risk, and body mass index (BMI) among people with severe mental illness (SMI) in psychiatric outpatient settings. Nearly 50% of the participants were exposed to moderate/high risk of CVD and over 50% were obese. The results showed no statistically relationships between the subjective and objective measures (Bayes factor <1) of health. The integration of physical health into clinical psychiatric nursing practice is vital.
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21.
  • Blomqvist, Marjut, 1966-, et al. (författare)
  • Relationship between Physical Activity and Health Outcomes in Persons with Psychotic Disorders after Participation in a 2-Year Individualized Lifestyle Intervention
  • 2023
  • Ingår i: Issues in Mental Health Nursing. - Philadelphia, PA : Taylor & Francis. - 0161-2840 .- 1096-4673. ; 44:7, s. 629-638
  • Tidskriftsartikel (refereegranskat)abstract
    • People with psychotic disorders have a significantly increased risk of physical diseases and excessive mortality rates. The aim of the study was to investigate relationships between changes in physical activity, levels of salutogenic health, and glycated hemoglobin among people with psychotic disorders after participation in an individualized lifestyle intervention. The results from analyses showed that self-reported increased physical activity was positively associated with the level of salutogenic health and negatively associated with the level of HbA1c on an individual level. The results indicate that coordinated, individualized, holistic and health-promoting nursing care is crucial to enabling enhanced lifestyle within this vulnerable target group. © 2023 The Author(s). Published with license by Taylor & Francis Group, LLC.
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22.
  • Bylund-Grenklo, Tove, et al. (författare)
  • Dignity in life and care : The perspectives of Swedish patients in a palliative care context
  • 2019
  • Ingår i: International Journal of Palliative Nursing. - : MA Healthcare Ltd. - 1357-6321 .- 2052-286X. ; 25:4, s. 193-201
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored. Aims: To describe patients' perspectives of what constitutes a dignified life within a palliative care context. Methods: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis. Results: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'. Conclusion: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial. 
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23.
  • Coelho, Adriana, et al. (författare)
  • The Effects of Guided Imagery on Comfort in Palliative Care
  • 2018
  • Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams & Wilkins. - 1522-2179 .- 1539-0705. ; 20:4, s. 392-399
  • Tidskriftsartikel (refereegranskat)abstract
    • Guided imagery (GI) is a nonpharmacological intervention that is increasingly implemented in different clinical contexts. However, there have been no studies on the effect of GI on the comfort of inpatients of palliative care (PC) units. Therefore, the aim of this study was to evaluate the effects of GI on the comfort of patients in PC. A 1-group, pretest-posttest, pre-experimental design was used to measure differences in heart rate, respiratory rate, pain, and comfort in patients (n = 26) before and after a 2-session GI program. The intervention featuring GI increased comfort, measured by an Abbreviated Holistic Comfort Scale and the visual analog comfort scale (P < .001), and decreased heart rate (P < .001), respiratory rate (P < .001), and pain, as measured by the (numerical) visual analog pain scale (P < .001). This study demonstrates that the use of an intervention featuring GI increases the comfort of oncology patients admitted to a PC unit. The use of GI by nurses is inexpensive, straightforward to implement, and readily available and may result in the provision of comfort care.
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24.
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25.
  • Dalteg, Tomas, et al. (författare)
  • The heart is a representation of life : an exploration of illness beliefs in couples living with atrial fibrillation
  • 2017
  • Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 16:Suppl. 1, s. S41-S41
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims and objectives. To explore illness beliefs in couples where one spouse has atrial fibrillation.& para;& para;Background. Beliefs are the lenses through which we view the world, guiding our behaviour and constructing our lives. Couples evolve an ecology of beliefs from their interaction whereby their actions and choices arise from their beliefs. Atrial fibrillation is a common cardiac arrhythmia that has implications for both patients and partners. A couple's illness beliefs play an important role in convalescence and illness management, and no previous studies have explored illness beliefs in couples living with atrial fibrillation.& para;& para;Design. A qualitative hermeneutic design.& para;& para;Methods. Data collection constituted in-depth interviews with nine couples (patient and partner together). Hermeneutic philosophy as described by Gadamer was used to interpret and to understand illness beliefs in couples living with atrial fibrillation.& para;& para;Results. The findings revealed both core illness beliefs and secondary illness beliefs. From the core illness belief 'The heart is a representation of life', two secondary illness beliefs were derived: atrial fibrillation is a threat to life and atrial fibrillation can and must be explained. From the core illness belief 'Change is an integral part of life', two secondary illness beliefs were derived: atrial fibrillation is a disruption in our lives and atrial fibrillation will not interfere with our lives. Finally, from the core illness belief 'Adaptation is fundamental in life', two secondary illness beliefs were derived: atrial fibrillation entails adjustment in daily life and atrial fibrillation entails confidence in and adherence to professional care.& para;& para;Conclusion. Couples' interaction has developed mutual illness beliefs regarding atrial fibrillation that guide them in their daily lives and influence their decisions. The adoption of a family-centred perspective in cardiovascular care settings is warranted.
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26.
  • Granat, Lisa, et al. (författare)
  • Evaluation of the Swedish Self-Efficacy in Palliative Care Scale and exploration of nurses' and physicians' self-efficacy in Swedish hospitals : A cross-sectional study
  • 2024
  • Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712.
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Previous research found that healthcare professionals had low preparedness for palliative care. Thus, it is necessary to explore healthcare professionals' self-efficacy. The Swedish Self-Efficacy in Palliative Care Scale (SEPC-SE) evaluates readiness in communication, patient management and multidisciplinary teamwork; however, it should be tested on a larger population. Furthermore, the constructs of the SEPC-SE should be compared to that of the original SEPC. Aim: This study aimed to evaluate the consensus between the construct validity and reliability of the SEPC and the translated and adapted SEPC-SE. Furthermore, it aimed to describe and compare the self-efficacy of nurses and physicians in hospitals and explore the associated factors. Methods: The nurses (n = 288) and physicians (n = 104) completed the SEPC-SE. Factor analysis with Cronbach's alpha evaluated validity and reliability, and an analysis using the Mann-Whitney U test compared self-efficacy and multiple linear regression-associated factors. Results: The SEPC-SE revealed three factors with high reliability. Education or experience in specialised palliative care was minor, especially for nurses. Self-efficacy was highest in patient management (nurses, median [md] = 74.57, physicians md = 81.71, p = 0.010) and communication (nurses md = 69.88, physicians md = 77.00, p = 0.141) and lowest in multidisciplinary teamwork (nurses md = 52.44, physicians md = 62.88, p = 0.001). The strongest associations with self-efficacy were education at work and advanced homecare experiences. In addition, there were significant associations between years in the profession, male sex, physicians and university education. Conclusion: The SEPC-SE is valid and reliable for measuring self-efficacy. Nurses had lower self-efficacy than physicians. Physicians were associated with higher self-efficacy and had more education and experience in palliative care settings, which may explain their levels of self-efficacy.
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27.
  • Granat, Lisa (författare)
  • Samtal vid allvarlig sjukdom - Kronobergsmodellen
  • 2024
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Aim: The overall aim of this thesis was to explore clinicians’ perceptions and self-efficacy regarding the use of the ‘Serious illness conversation’ structured workflow, and to explore their self-efficacy in caring for patients with palliative care needs.Methods: This thesis is comprised of four studies: two qualitative studies, one methodological study, and one quantitative study. In studies I and II, observations of clinic meetings and training sessions were undertaken with clinicians. Interviews were performed and a thematic analysis was conducted. In study III, the Self-Efficacy in Palliative Care scale (SEPC) was translated, adapted, and validated. In study IV, the SEPC-SE was completed by nurses and physicians. Factor analysis and Cronbach's alpha were calculated, and the Mann-Whitney U test was used to compare self-efficacy. Multiple linear regression was used to explore associated factors.Results: In study I, clinicians expressed that working with serious illness conversations was vital, but the conversations were also considered in terms of risks. The conversation training sessions created feelings of exposure but were perceived to be rewarding due to an increase in self-awareness. Obstacles in practice were identified as barriers to change. Study II showed that positive experiences and the group’s level of support, consensus, and behaviour was important for self-efficacy. Some clinicians were affected by perceived high demands, failures, anxiety, stress, when working with serious illness conversations. Study III showed that the SEPC-SE needed improvements in understandability and clarity. In study IV, the SEPC-SE reported high reliability. Physicians reported higher self-efficacy than nurses. Education at work and experience in advanced homecare had the strongest associations with self-efficacy.Conclusions: Implementing serious illness conversations can increase clinicians’ awareness about the importance of engaging in serious illness conversations and thus contribute to increased motivation through behavioural and attitudinal changes. However, building a support system for clinicians within the organisation seems essential for improving self-efficacy. The SEPC-SE was found to be valid and reliable. Clinicians’ estimation of their perceived self-efficacy indicates that healthcare organisations should prioritise work-related education and experience to improve self-efficacy in providing palliative care.
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28.
  • Granat, Lisa, et al. (författare)
  • Translation, adaptation, and validation of the Self-efficacy in Palliative Care scale (SEPC) for use in Swedish healthcare settings
  • 2022
  • Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 21:1
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundOne challenge for healthcare professionals when delivering palliative care can be their lack of confidence. The Self-efficacy in Palliative Care Scale (SEPC) is considered a valid and reliable assessment scale to evaluate confidence when delivering palliative care. Currently, there is not a reliable instrument aimed to measure healthcare professionals’ confidence in palliative care in Swedish. Therefore, this study aimed to translate, culturally adapt, and validate the SEPC-scale for use in a Swedish healthcare context.MethodsThis study applied the World Health Organization’s (WHO) guidelines for translating and adapting instruments, using forward and back-translation, an expert panel, and cognitive interviews. Swedish experts in palliative care (n = 6) assessed the Swedish version of the SEPC-scale based on its relevance, understandability, clarity, and sensitivity on a Likert scale. Methods involved calculation of content validity index (CVI) with modified kappa statistics and cognitive interviewing with healthcare professionals (n = 10) according to the “think-aloud” method.ResultsCalculation of I-CVI (Item-CVI) showed that the Swedish SEPC-scale was considered relevant but needed some modifications to improve its understandability and clarity. The experts recognized an absence of precision in some items that affected clarity and understanding. Likewise, the healthcare professionals highlighted some challenges with understandability and clarity. They indicated that the scale was relevant, but a few items needed adjustment to fit a broader range of healthcare professionals. Items that referred to death and dying could be sensitive but were considered relevant.ConclusionsThe SEPC-scale is considered valid for use in Swedish healthcare practice, for a broad range of healthcare professionals, and for diagnoses other than cancer. This study shows that cultural adaptation is necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.
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29.
  • Grimheden, Sofia, et al. (författare)
  • An obligation to care for seriously ill children in their homes : a qualitative study of community nurses' perceptions
  • 2017
  • Ingår i: Nordic journal of nursing research. - : Sage Publications. - 2057-1585 .- 2057-1593. ; 37:4, s. 201-208
  • Tidskriftsartikel (refereegranskat)abstract
    • When children are seriously ill, being able to be cared for at home with the family is valuable, but community nurses are often not trained to care for children. The aim of this study was therefore to describe community nurses´perceptions of caring for serioulsy ill children at home. A content analysis was conducted of 11 semi-structed interviews with nurses. One theme, obligation to care, was found, followed by three categories: making an impact, feeling confident, and emotional processing. In conclusion, we found collaboration with paediatric staff in the hospital is important for community nurses in order to gain confidence, which would optimise care at home for seriously ill children and their families.
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30.
  • Heikkilä, Kristiina, 1958-, et al. (författare)
  • Mealtime interventions and their outcomes in care homes for older people considering the five aspects meal model : An integrative review
  • 2022
  • Ingår i: Geriatric Nursing. - : Elsevier. - 0197-4572 .- 1528-3984. ; 47, s. 171-182
  • Tidskriftsartikel (refereegranskat)abstract
    • Mealtimes are important events in care homes for physical and social well-being. However, residents usually have little input concerning meal timings, what food is offered, and how it is served. This integrative review explored mealtime interventions and their outcomes in care homes related to the Five Aspects Meal Model (FAMM). Research articles published 2010–2021 were searched for in ASSIA, CINAHL, PsycINFO, PubMed, and SveMed+ and resulted in 13 articles focusing on interventions. The analysis was based on the aspects of FAMM: room, meeting, product, management control system, and atmosphere. The result shows that even though interventions specifically focused on one aspect, they often evaluated outcomes related to several aspects. Different aspects can work together to foster effective mealtimes. FAMM eased to visualise the usefulness of mealtime interventions from a broad perspective and can be a useful tool for assessing and improving mealtime situations in clinical practice.
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31.
  • Hjelmfors, A-L, et al. (författare)
  • Patient perspectives of prognosis communication
  • 2017
  • Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 16, s. S65-S66
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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32.
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33.
  • Kirvalidze, Mariam, et al. (författare)
  • Effectiveness of integrated person-centered interventions for older people's care : Review of Swedish experiences and experts' perspective
  • 2024
  • Ingår i: Journal of Internal Medicine. - : John Wiley & Sons. - 0954-6820 .- 1365-2796.
  • Tidskriftsartikel (refereegranskat)abstract
    • Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field. image
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34.
  • Morberg Jämterud, Sofia, PhD, 1977-, et al. (författare)
  • Health care professionals' perceptions of factors influencing the process of identifying patients for serious illness conversations : A qualitative study
  • 2022
  • Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 36:7, s. 1072-1079
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The Serious Illness Care Programme enables patients to receive care that is in accordance with their priorities. However, despite clarity about palliative care needs, many barriers to and difficulties in identifying patients for serious illness conversations remain. Aim: To explore healthcare professionals' perceptions about factors influencing the process of identifying patients for serious illness conversations. Design: Qualitative design. A thematic analysis of observations and semi-structured interviews was used. Setting/participants: Twelve observations at team meetings in which physicians and nurses discussed the process of identifying the patients for serious illness conversations were conducted at eight different clinics in two hospitals. Semi-structured interviews were conducted with three physicians and two nurses from five clinics. Results: Identifying the right patient and doing so at the right time were key to identifying patients for serious illness conversations. The continuity of relations and continuity over time could facilitate the identification process, while attitudes towards death and its relation to hope could hinder the process. Conclusions: The process of identifying patients for serious illness conversations is complex and may not be captured only by generic tools such as the surprise question. It is crucial to address existential and ethical obstacles that can hinder the identification of patients for serious illness conversations.
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35.
  • Munck, Berit, et al. (författare)
  • The impact of medical technology on sense of security in the palliative home care setting
  • 2017
  • Ingår i: British Journal of Community Nursing. - : Mark Allen Group. - 1462-4753 .- 2052-2215. ; 22:3, s. 130-135
  • Tidskriftsartikel (refereegranskat)abstract
    • The increase in the use of medical devices in palliative home care requires that patients and next-of-kin feel secure. Therefore, the aim was to describe medical technology's impact on the sense of security for patients, next-of-kin and district nurses. Deductive content analysis was conducted on data from three previous studies, using the theoretical framework 'palliative home care as a secure base'. The use of medical technology was shown to have an impact on the sense of security for all involved. A sense of control was promoted by trust in staff and their competence in managing the technology, which was linked to continuity. Inner peace and being in comfort implied effective symptom relief facilitated by pain pumps and being relieved of responsibility. Health care professionals need to have practical knowledge about medical technology, but at the same time have an awareness of how to create and maintain a sense of security.
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36.
  • Möllerberg, Marie-Louise, et al. (författare)
  • Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members
  • 2020
  • Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 18:1, s. 24-32
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample. Methods Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden. Results Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45-0.70 and 0.55-0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (r(s) > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (k(w) = 0.37-0.61).
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37.
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38.
  • Möllerberg, Marie-Louise, et al. (författare)
  • 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
  • Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 33:10, s. 1310-1318
  • 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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39.
  • Nielsen, Magdalena, et al. (författare)
  • The five aspects mealtime environment observationinstrument for assessing mealtime environments in nursing homes : Development and validation
  • 2023
  • Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712.
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims and ObjectivesTo further develop and validate the Mealtime instrument, an observational instrument for assessing mealtime environments in nursing homes originating from the theoretical framework: Five Aspects Meal Model (FAMM).Methodological Design and JustificationA mealtime experience is significant for a sense of well-being. In nursing homes, residents' personal preferences, combined with their diagnoses and different stages of illness, influence their mealtime experience and provide a complexity that has been found difficult to assess. Using FAMM, a theoretical framework as its base, this study, attempts to look at different parts of the mealtime environment. FAMM structures the mealtime environment in to five aspects: room, meeting, product, management control system and atmosphere.This study's design includes instrument development and validation.Ethical Issues and ApprovalThis study has been approved by the Swedish Ethical Review Authority (dnr 2019–05477).DesignMethodological study.Research MethodAn existing instrument, the Mealtime instrument with FAMM as a theoretical framework, was used as a foundation for the development of the Five Aspects Mealtime Environment Observation Instrument (FAME-OI). Content validity index (CVI) was used to validate FAME-OI.ResultsFAME-OI's item-CVI, scale-CVI and modified Kappa displayed high validity. Changes were made in its structure and phrasing. These developments resulted in having a distinct structure in FAME-OI, in reference to FAMM.ConclusionFAME-OI is applicable for clinical use in nursing homes and in research; however, adjustments may be needed before its use in other health care facilities.
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40.
  • Parola, Vitor, et al. (författare)
  • Burnout in Palliative Care Settings Compared With Other Settings : A Systematic Review
  • 2017
  • Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams & Wilkins. - 1522-2179 .- 1539-0705. ; 19:5, s. 442-451
  • Tidskriftsartikel (refereegranskat)abstract
    • A systematic review, using the guideline of the Joanna Briggs Institute, was conducted to explore the effect of working in palliative care settings, compared with other settings, on burnout among health care professionals. Multiple databases were searched-CINAHL, PubMed, Scopus, and SciELOV-as well as gray literature for studies published since 1975 that compared health professionals caring for patients older than 18 years in specialized palliative care settings (palliative care units, home care, or hospices) with health professionals working in other settings. Of the 539 studies retrieved, 7 cross-sectional studies were included in this review. Of these, six were conducted with nurses, and six used the Maslach Burnout Inventory. Working in palliative care (palliative care unit or hospices) was associated with lower levels of emotional exhaustion and depersonalization, as well as higher levels of personal accomplishment, compared with working in other settings. Evidence indicates that burnout levels seem to be lower among professionals working in palliative care compared with professionals working in other settings. Further research is needed to explore the strategies used by nurses working in palliative care that help them deal with burnout and to apply these same strategies to professionals working in other settings.
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41.
  • Parola, Vitor, et al. (författare)
  • Caring in Palliative Care : A Phenomenological Study of Nurses' Lived Experiences
  • 2018
  • Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams & Wilkins. - 1522-2179 .- 1539-0705. ; 20:2, s. 180-186
  • Tidskriftsartikel (refereegranskat)abstract
    • Providing palliative care involves serious challenges for nurses, such as end-of-life decisions, contact with people's suffering and dying, and increased risk of burnout. However, studies have revealed that the burnout level of health professionals working in palliative care is lower than that of health professionals working in other settings. This study aimed to describe the lived experiences of nurses caring in a palliative care unit. A phenomenological descriptive study was undertaken. Nine nurses were recruited from a palliative care unit in Portugal. Data were collected using individual interviews and analyzed following the method of Giorgi. Five themes reflect the essence of the lived experience: (1) experience centered on the relationship with the other (ie, the patient and the family), (2) experience centered on the relationship with one's own self, (3) exhausting experience, (4) rewarding experience, and (5) the team as a pillar. These findings can be valuable for understanding the challenges and strategies experienced by nurses caring in palliative care and for designing interventions that focus on reducing the risk of burnout among nursesnot only those working in palliative care but also those working in other contexts who experience regular contact with suffering and death.
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42.
  • Parola, Vitor, et al. (författare)
  • Prevalence of burnout in health professionals working in palliative care : a systematic review
  • 2017
  • Ingår i: The JBI Database of Systematic Reviews and Implementation Reports. - : University of Adelaide. - 2202-4433. ; 15:7, s. 1905-1933
  • Forskningsöversikt (refereegranskat)abstract
    • BACKGROUND: More than ever, the current increasing need for palliative care leads to health professionals providing this type of care which further leads to multiple challenges, and stressful and demanding situations. The multiple challenges of working in palliative care put health professionals working in this context at the risk of burnout.OBJECTIVES: To examine the evidence on the prevalence of burnout among health professionals working in palliative care.INCLUSION CRITERIA TYPES OF PARTICIPANTS: The current review included studies that encompass qualified health professionals working in palliative care, caring for patients 18 years of age or older.CONDITION: The current review considered studies reporting on the point prevalence of burnout, measured by a burnout scale, such as, but not limited to, the Maslach Burnout Inventory, Burnout Measure and Copenhagen Burnout Inventory.CONTEXT: The current review considered studies conducted in the context of specialist palliative care, more specifically, palliative care units, specialized palliative home care or hospices.TYPES OF STUDIES: The current review considered observational study designs, including prospective and retrospective cohort, case-control and cross-sectional studies.SEARCH STRATEGY: An initial search of MEDLINE (via PubMed) and CINAHL was undertaken, followed by a second search for published and unpublished studies since 1975 in major healthcare-related electronic databases. Studies written in English, Spanish and Portuguese were included.METHODOLOGICAL QUALITY: Two independent reviewers assessed the methodological quality of studies using the standardized critical appraisal instrument from the Joanna Briggs Institute. No studies were excluded from the review based on the methodological appraisal.DATA EXTRACTION: Data were extracted using a data extraction table, taking into account the review questions.DATA SYNTHESIS: Significant differences were found between condition measures, thus we were unable to perform a meta-analysis.RESULTS: Eight cross-sectional studies met the inclusion criteria, with a total of 1406 health professionals. The sample was limited to nurses, physicians and social workers. None of the included articles presented data about other health professionals. Seven of the included studies assessed the prevalence of burnout using the same instrument - the Maslach Burnout Inventory. Data revealed a prevalence of burnout of 17.3% among health professionals. Personal Accomplishment was the sub-scale from the Maslach Burnout Inventory that had the highest prevalence (19.5%). Nurses had higher levels of Emotional Exhaustion (19.5%) and Depersonalization (8.2%), and physicians had lower levels of Personal Accomplishment (41.2%). The prevalence of burnout was, however, higher in social workers (27%). The palliative care context with the highest prevalence of burnout was home care (19.6%).CONCLUSION: The current systematic review contributes to a body of empirical knowledge that can facilitate the professional development of palliative care teams by highlighting the prevalence of burnout in health professionals, which staff category is the most affected (social workers), and which palliative care context has the highest prevalence (home care).
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43.
  • Pusa, Susanna, et al. (författare)
  • Core Competencies for Serious Illness Conversations : An Integrative Systematic Review
  • 2024
  • Ingår i: Journal of Palliative Care. - : Sage Publications. - 0825-8597.
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The core competencies, that is, the essential clinical conversation skills that are described as requisite for effective serious illness conversations (SICs) in practice, have not yet been explicated. This integrative systematic review aimed to identify core competencies for SICs in the context of the Serious Illness Care Program. Methods: Articles published between January 2014 and March 2023 were identified in MEDLINE, PsycINFO, CINAHL, and PubMed databases. In total, 313 records underwent title and abstract screening, and 96 full-text articles were assessed for eligibility. The articles were critically appraised using the Joanna Briggs Institute Critical Appraisal Guidelines, and data were analyzed using thematic synthesis. Results: In total, 53 articles were included. Clinicians' core competencies for SICs were described in 3 themes: conversation resources, intrapersonal capabilities, and interpersonal capabilities. Conversation resources included using the conversation guide as a tool, together with applying appropriate communication skills to support better communication. Intrapersonal capabilities included calibrating one's own attitudes and mindset as well as confidence and self-assurance to engage in SICs. Interpersonal capabilities focused on the clinician's ability to interact with patients and family members to foster a mutually trusting relationship, including empathetic communication with attention and adherence to patient and family members views, goals, needs, and preferences. Conclusions: Clinicians need to efficiently combine conversation resources with intrapersonal and interpersonal skills to successfully conduct and interact in SICs.
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44.
  • Pusa, Susanna, et al. (författare)
  • Physicians' perceptions of the implementation of the serious illness care program : a qualitative study
  • 2023
  • Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundConversations about goals, values and priorities with patients that are seriously ill are associated with improved palliative healthcare. The Serious Illness Care Program is a multi-component program that can facilitate more, better, and earlier conversations between clinicians and seriously ill patients. For successful and sustainable implementation of the Serious Illness Care Program, it is important to consider how stakeholders perceive it. The aim of our study was to explore physicians' perceptions and experiences of implementing the Serious Illness Care Program.MethodsData were collected through four focus group discussions with physicians (n = 14) working at a hospital where the Serious Illness Care program was in the process of being implemented. Data were analyzed with inductive thematic analysis.ResultsPhysicians' perceptions of the implementation encompassed three thematic areas: hovering between preparedness and unpreparedness, being impacted and being impactful, and picking pieces or embracing it at all.ConclusionsThis study identified key aspects related to the individual physician, the care team, the impact on the patient, and the organizational support that were perceived to influence the implementation and sustainable integration of the Serious Illness Care Program. Describing these aspects provides insight into how the Serious Illness Care Program is implemented in practice and indicates areas for future training and development.Trial registrationNot applicable.
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45.
  • Reigada, Carla, et al. (författare)
  • Combining interdisciplinarity and creative design- A powerful strategy to increase palliative care awareness within a university community
  • 2022
  • Ingår i: Thinking Skills and Creativity. - : Elsevier. - 1871-1871 .- 1878-0423. ; 46
  • Tidskriftsartikel (refereegranskat)abstract
    • Society's understanding of palliative care has room for improvement. Although the World Health Organisation highlighted palliative care as a human right, many people still lack access to this crucial form of treatment. The paucity of understanding and social discussion surrounding palliative care has, moreover, negatively impacted its development and implementation. This study therefore aims to construct a strategy that will empower a specific community to solve their own palliative care-related misunderstandings. Using Participatory Action Research and Design Thinking methodologies and adopting the strategy of Public Engagement in Responsible Research and Innovation, a design group worked for three months through five virtual focus groups. Moving through the phases of empathizing, defining, ideation, prototyping, and testing, the design group generated 33 ideas to address palliative care-related problems. Ideas related to self -learning, the use of technology, and the exchange of personal experiences are highlighted as innovative ways to promote palliative care. The design group adopted a variety of strategies, used disruptive tools, and created and tested rapid prototypes to discover novel solutions. This method of working, centred on interdisciplinarity and creativity, presents an efficient way to involve the members of a community in solving their own problems.
  •  
46.
  • Reigada, Carla, et al. (författare)
  • Interdisciplinary discussions on palliative care among university students in Spain : giving voice to the social debate
  • 2021
  • Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 16:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: University students are the future professionals who will influence society. It is thus essential to improve students’ understanding of palliative care (PC), especially those in the non-health field, to generate and encourage propitious opinions about PC. This study describes the perceptions of PC among university students from different disciplines.Method: Qualitative exploratory study using virtual focus groups (FGs) and design thinking (DT) approach. An intentional sample of students from various disciplines, universities and cities from Spain were selected. Numerous researchers from different fields were involved in the discussion of the final thematic analysis.Results: Four themes and seven subthemes were found: i) Students have an ambiguous understanding about PC; ii) PC is not a common issue for non-health students; ii) Students see PC as an important and necessary field; iii) Students build counter-narratives against PC myths, demonstrating PC brings key benefits into people’s lives; iv) PC is a synonym of death.Conclusion: Despite the fact that students do not know much about PC, the topic easily arouses reflection and positive discussion. Through the conversations they find positive values and arguments against misunderstand- ing. Students from different disciplines could be the target of innovative educational initia- tives and the social debate on PC.
  •  
47.
  • Reigada, Carla, et al. (författare)
  • Palliative care stay room - designing, testing and evaluating a gamified social intervention to enhance palliative care awareness
  • 2023
  • Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 22:1
  • Tidskriftsartikel (refereegranskat)abstract
    • IntroductionThe message of palliative care can be promoted using creative thinking and gamification. It can be an innovative strategy to promote changes in behaviour, promote thinking, and work on skills such as empathy.AimDesign, test and evaluate a gamified social intervention to enhance palliative care awareness among young university students from non-health background.MethodsParticipatory action research study with mixed methods, Design Thinking and using the Public Engagement strategy. Forty-three undergraduate students participated in a Palliative Care Stay Room and completed the Test of Cognitive and Affective Empathy (TECA) before and after the game. At the end of the game, a ten-minute debriefing was held with the participants, which was concluded with an open conversation. The content analysis was done independently and the sum of the scores of each dimension was compared before and after the activity.FindingsThe Stay Room improved the participants' knowledge and new perspectives about palliative care. Before the game, their views focused on the end of life and after the game on their values, highlighting the dedication of the healthcare professionals who do not treat death but the life until death. After de game, participants (N = 43: female = 23; male = 20; x 19.6 years old) presented higher values in perspective adoption (intellectual ability to put oneself in the other's place) p = 0.046 and in emotional understanding (ability to recognize emotional states) p = 0.018, and had high scores on empathic joy (p = 0.08).ConclusionGamification can be used in teaching and transmitting positive attitudes. Palliative Care and can help young university students to think positively about care issues.
  •  
48.
  • Reigada, Carla, et al. (författare)
  • Understanding illnesses through a film festival : An observational study
  • 2019
  • Ingår i: Heliyon. - : Elsevier. - 2405-8440. ; 5:8, s. 1-8
  • Tidskriftsartikel (refereegranskat)abstract
    • Audio-visual materials play a fundamental role in the context of education, care and clinical treatment, as they seem to have a high impact on public awareness. This study aims to describe what messages are perceived by the society at an International Festival of Short Films and Art on Diseases that may help to understand difficult topics, such as illness, dying and suffering. Through an observational, descriptive, cross-sectional study, using full participant observation and an open, self-administered questionnaire, 32 short films were analysed during a healthcare art festival. Categories were developed using inductive content analysis. The message perceived by the participants, after the viewing of the shorts and reflection of the debates among the attendees, were considered in four categories: i) creative and positive education is possible; ii) awareness of preconception and practical duties; iii) meaning of life changes the experience of illness; iv) family and caregivers also experienced suffering. The short films are considered as an excellent tool to generate social dialogue and debate. Public events can be understood as an opportunity to acquire, in an emotional and critical manner, other competencies for public awareness. Together, they are capable of communicating difficult messages through a fast, positive, and creative way.
  •  
49.
  • Sandgren, Anna, 1970-, et al. (författare)
  • Anticipatory Caring
  • 2008
  • Ingår i: The Grounded Theory Review. - 1556-1542 .- 1556-1550. ; 7:3
  • Tidskriftsartikel (refereegranskat)abstract
    • Today, more and more people die in own homes and nursinghomes, which fundamentally affects community nursing. The aimof this study was to develop a grounded theory of palliative homenursing care and we analyzed interviews and data related to thebehavior of community nurses caring for palliative cancerpatients. Doing Good Care emerged as the pattern of behaviorthrough which nurses deal with their main concern, their desireto do good care. The theory Doing Good Care involves threecaring behaviors; anticipatory caring, momentary caring andstagnated caring. In anticipatory caring, which is the optimalcaring behavior, nurses are doing their best or even better thannecessary, in momentary caring nurses are doing bestmomentarily and in stagnated caring nurses are doing good butfrom the perspective of what is expected of them. When nursesfail in doing good, they experience a feeling of letting the patientdown, which can lead to frustration and feelings of powerlessness.Depending on the circumstances, nurses can hover between thethree different caring behaviors. We suggest that healthcareproviders increase the status of palliative care and facilitate fornurses to give anticipatory care by providing adequate resourcesand recognition.
  •  
50.
  • Sandgren, Anna, 1970- (författare)
  • Complexities in Palliative Cancer Care : Can Grounded Theories be Useful to Increase Awareness?
  • 2017
  • Ingår i: The Grounded Theory Review. - : Sociology Press. - 1556-1542 .- 1556-1550. ; 16:1, s. 75-78
  • Tidskriftsartikel (refereegranskat)abstract
    • This paper includes first a summary of a grounded theory "Living on hold", which was one of four different grounded theories in my dissertation (Sandgren, 2010). The theory is then explained in relation to the other grounded theories to give an example of how different grounded theories can be integrated, which leads to an increased awareness of what is going on in a research area.
  •  
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