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1.	Skulason, Bragi, et al. (författare) Identifying obstacles to participation in a questionnaire survey on widowers' grief 2010 Ingår i: BMC Palliative Care. - Stockholm : Karolinska Institutet, Dept of Public Health Sciences. - 1472-684X. Tidskriftsartikel (refereegranskat)abstract Background: The aim of this study was to determine if Icelandic widowers might foresee obstacles to responding to a questionnaire on bereavement. Also, we sought to compare the proportion of men reporting obstacles in a telephone interview to the actual response rate in the questionnaire survey. Methods: The study was part of a nation-wide survey of widowers who lost their wives in 1999, 2000, and 2001. This included all widowers born in Iceland 1924-1969 (aged 30-75 years) who were alive, and residing in Iceland at the time of the study. A telephone poll was conducted prior to sending out a questionnaire to determine if the widowers would be interested in responding, or if they could see obstacles, which could affect their willingness to respond to a subsequent questionnaire survey. The telephone poll was repeated five years later with a random sample of the original study base to determine if views initially expressed towards the questionnaire survey, had changed over time. Results: Of the 357 eligible widowers, 11 had died prior to the first telephone interview, yielding a study population of 346 widowers. Of those, 296 (86%) were reachable and all of these (100%) were willing to participate in the telephone survey. Of them, 55% identified obstacles to participation in the questionnaire survey. Men under 60 years were less likely to identify obstacles. Years from loss (second through fourth years) were not associated with reporting obstacles to participation. The response rate in the epidemiological questionnaire survey following the telephone interview was 62% (216/346). Of those who did identify obstacles 23%, did not did not identify any particular obstacle, but 33% stated that "they felt bad" or that it would be "a painful experience" or that they felt "uncomfortable" talking about their grief. About 18% stated their grief was "a private matter"; 6% stated that they did not want to be "stuck with their grief"; 9% said that it was "too late" to talk about their grief or that they "wanted to look towards their future". Additionally, 11% stated "other reasons", including responses like: "it's too early to talk about it", and "I have started another relationship - don't want complications." Conclusions: The willingness to participate in the telephone interview was high and indicates a strong interest in the subject. Also, exposure to the study appeared to increase willingness to participate, since many men who initially could see obstacles to participation, actually participated in the epidemiological questionnaire survey. However, approximately one third of the men who initially identified obstacles to participation remained negative toward participation throughout the study period.
2.	Hoff, Lena, et al. (författare) In the shadow of bad news - views of patients with acute leukaemia, myeloma or lung cancer about information, from diagnosis to cure or death 2007 Ingår i: BMC Palliative Care. - 1472-684X. ; 6:Article nr. 1 Tidskriftsartikel (refereegranskat)abstract Many studies have been published about giving and receiving bad messages. However, only a few of them have followed the patients all the way through a disease as is done in this study. Many studies have been written about patients' coping strategies. In this study we will keep within the bounds of coping through information only. The aim of the study is to investigate patients' views of information during the trajectory of their disease, whether their reactions differ from each other and whether they differ in different phases of the disease.
3.	Hoff, Lena, et al. (författare) Information from physicians and retention of information by patients - obstacles to the awareness of patients of progressing disease when life is near the end 2008 Ingår i: BMC Palliative Care. - 1472-684X. ; 7 Tidskriftsartikel (refereegranskat)abstract Discrepancies between the information that patients have received and the patients' awareness of their condition have frequently been observed in literature and given a number of different explanations. The chief contribution of this study is that by following patients over time it is possible not only to notice any changes in the patients' knowledge or awareness of their disease, but also to investigate the interview material for possible reasons for those changes. Since the study is based on two different groups of patients it will also be possible to notice if the category of disease matters for patients' awareness of their condition.
4.	Thulesius, Hans, et al. (författare) De-tabooing dying control - a grounded theory study. 2013 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 12, s. 1-8 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Dying is inescapable yet remains a neglected issue in modern health care. The research question in this study was "what is going on in the field of dying today?" What emerged was to eventually present a grounded theory of control of dying focusing specifically on how people react in relation to issues about euthanasia and physician-assisted suicide (PAS).METHODS: Classic grounded theory was used to analyze interviews with 55 laypersons and health care professionals in North America and Europe, surveys on attitudes to PAS among physicians and the Swedish general public, and scientific literature, North American discussion forum websites, and news sites.RESULTS: Open awareness of the nature and timing of a patient's death became common in health care during the 1960s in the Western world. Open dying awareness contexts can be seen as the start of a weakening of a taboo towards controlled dying called de-tabooing. The growth of the hospice movement and palliative care, but also the legalization of euthanasia and PAS in the Benelux countries, and PAS in Montana, Oregon and Washington further represents de-tabooing dying control. An attitude positioning between the taboo of dying control and a growing taboo against questioning patient autonomy and self-determination called de-paternalizing is another aspect of de-tabooing. When confronted with a taboo, people first react emotionally based on "gut feelings" - emotional positioning. This is followed by reasoning and label wrestling using euphemisms and dysphemisms - reflective positioning. Rarely is de-tabooing unconditional but enabled by stipulated positioning as in soft laws (palliative care guidelines) and hard laws (euthanasia/PAS legislation). From a global perspective three shapes of dying control emerge. First, suboptimal palliative care in closed awareness contexts seen in Asian, Islamic and Latin cultures, called closed dying. Second, palliative care and sedation therapy, but not euthanasia or PAS, is seen in Europe and North America, called open dying with reversible medical control. Third, palliative care, sedation therapy, and PAS or euthanasia occurs together in the Benelux countries, Oregon, Washington and Montana, called open dying with irreversible medical control.CONCLUSIONS: De-tabooing dying control is an assumed secular process starting with open awareness contexts of dying half a century ago, and continuing with the growth of the palliative care movement and later euthanasia and PAS legislation.
5.	Karlsson, Magdalena, et al. (författare) Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study 2014 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 13 Tidskriftsartikel (refereegranskat)abstract Background: Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. Methods: This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. Results: This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves - a new experience that lays the foundation for development of knowledge, personal learning and growth. Conclusions: People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
6.	Skulason, B., et al. (författare) Death talk: gender differences in talking about one's own impending death 2014 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 13:8 Tidskriftsartikel (refereegranskat)abstract Background: According to common practice based on a generally agreed interpretation of Icelandic law on the rights of patients, health care professionals cannot discuss prognosis and treatment with a patient's family without that patient's consent. This limitation poses ethical problems, because research has shown that, in the absence of insight and communication regarding a patient's impending death, patient's significant others may subsequently experience long-term psychological distress. It is also reportedly important for most dying patients to know that health care personnel are comfortable with talking about death and dying. There is only very limited information concerning gender differences regarding death talk in terminal care patients. Methods: This is a retrospective analysis of detailed prospective "field notes" from chaplain interviews of all patients aged 30-75 years receiving palliative care and/or with DNR (do not resuscitate) written on their charts who requested an interview with a hospital chaplain during a period of 3 years. After all study patients had died, these notes were analyzed to assess the prevalence of patient-initiated discussions regarding their own impending death and whether non-provocative evocation-type interventions had facilitated such communication. Results: During the 3-year study period, 195 interviews (114 men, 81 women) were conducted. According to the field notes, 80% of women and 30% of men initiated death talk within the planned 30-minute interviews. After evoking interventions, 59% (67/114) of men and 91% (74/81) of women engaged in death talk. Even with these interventions, at the end of the first interview gender differences were still statistically significant (p = 0.001). By the end of the second interview gender difference was less, but still statistically significant (p = 0.001). Conclusions: Gender differences in terminal care communication may be radically reduced by using simple evocation methods that are relatively unpretentious, but require considerable clinical training. Men in terminal care are more reluctant than women to enter into discussion regarding their own impending death in clinical settings. Intervention based on non-provocative evocation methods may increase death talk in both genders, the relative increase being higher for men.
7.	Juth, N, et al. (författare) European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion 2010 Ingår i: BMC palliative care. - 1472-684X. ; 9, s. 20- Tidskriftsartikel (refereegranskat)
8.	Karlsson, Magdalena, et al. (författare) Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment : A life-world phenomenological study 2014 Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 13:28 Tidskriftsartikel (refereegranskat)abstract BackgroundMany people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.MethodsThis study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.ResultsThis study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.ConclusionsPeople diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
9.	Lokk, J, et al. (författare) Clinical aspects of palliative care in advanced Parkinson's disease 2012 Ingår i: BMC palliative care. - 1472-684X. ; 11, s. 20- Tidskriftsartikel (refereegranskat)
10.	Skulason, B, et al. (författare) Death talk: gender differences in talking about one's own impending death 2014 Ingår i: BMC palliative care. - 1472-684X. ; 13:1, s. 8- Tidskriftsartikel (refereegranskat)
11.	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.
12.	Ahlström, Gerd, et al. (författare) Similarities and differences between China and Sweden regarding the core features of palliative care for people aged 60 or older : a systematic scoping review 2022 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 21 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Despite the increasing longevity of the world's population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden.METHODS: The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007-2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains.RESULTS: Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions.CONCLUSIONS: Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons' need for palliative care and should take account of issues concerning research ethics, ethnicity and culture.REGISTERED IN PROSPERO: CRD42020078685 , available from.
13.	Alvariza, A., et al. (författare) Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention 2020 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1 Tidskriftsartikel (refereegranskat)abstract Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
14.	Annersten Gershater, Magdalena, et al. (författare) Nurse assistants' perception of caring for older persons who are dying in their own home : An interview study. 2024 Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 23:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: As the proportion of older persons in society increases, there is a growing trend towards providing end-of-life care in their homes. Palliative care is a complex and knowledge-demanding form of care, and nurse assistants are those who work closest to the older person at the end-of-life in their own homes. However, nurse assistants sometimes have low educational and insufficient levels of knowledge in palliative care, which can affect the quality of care they provide. Moreover, nurse assistants' experiences are relatively unexplored in this context. The purpose of the study was to illuminate nurse assistants' experiences in caring for dying older persons at home.METHOD: An empirical, qualitative interview study was conducted with 14 nurse assistants with experience of palliative care in homecare. The material was analyzed using thematic content analysis.RESULTS: From the nurse assistant's experiences, one main theme emerged: doing everything possible for the dying older person despite challenges. Moreover, three sub-themes emerged: making a difference at a crucial time, death awakens emotions, and balancing personal and professional relationships. The nurse assistants' saw their role primarily as relieving symptoms but also focusing on next of kin. The following are described as essential parts of their role: carrying out practical nursing tasks, focusing on the physical environment, working alone and seeking help from colleagues due to a physical distance to the other members of the multidisciplinary team. The nurse assistants experienced a lack of support as there was no structured guidance or debriefing available in difficult emotional situations. Furthermore, they disclosed that they were left alone to deal with their feelings.CONCLUSION: This study demonstrates that nurse assistants strive to provide comprehensive care for dying older persons despite facing obstacles from their working conditions and work organization. They lack supervision and education in palliative care, but they rely on their experience-based knowledge to a large extent and provide care according to the four cornerstones of palliative care.
15.	Axelsson, Lena, et al. (författare) End-of-life and palliative care of patients on maintenance hemodialysis treatment : a focus group study 2019 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 18:1, s. 1-10 Tidskriftsartikel (refereegranskat)abstract Background: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis. Methods: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data. Results: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance. Conclusions: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.
16.	Axelsson, Lena, et al. (författare) Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers 2020 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1 Tidskriftsartikel (refereegranskat)abstract Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. Methods The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Results Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. Conclusions The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
17.	Beck, Ingela, et al. (författare) Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff 2017 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.
18.	Bergersen, Emily Beatrice, et al. (författare) Adolescents' and young people's needs and preferences for support when living with a parent with life-threatening cancer : a grounded theory study 2022 Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 21:1 Tidskriftsartikel (refereegranskat)abstract Background Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer. Methods Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz. Results Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'. Conclusion Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.
19.	Bergman, Ann-Sofie, 1963-, et al. (författare) When a parent dies : a systematic review of the effects of support programs for parentally bereaved children and their caregivers 2017 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 16, s. 1-15 Tidskriftsartikel (refereegranskat)abstract Background: The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research.Methods: The review’s inclusion criteria were comparative studies with samples of parentally bereaved children. The focus of these studies were assessments of the effects on children of a bereavement support intervention. The intervention was directed towards children 0–18 years;but it could also target the children’s remaining parent/caregiver. The study included an outcome measure that dealt with effects of the intervention on children. The following electronic databases were searched up to and including November 2015: PubMed, PsycINFO, Cinahl, PILOTS, ProQuest Sociology (Sociological Abstracts and Social Services Abstracts). The included studies were analysed and summarized based on the following categories: type of intervention, reference and grade of evidence, study population, evaluation design, measure, outcome variable and findings as effect size within and between groups.Results: One thousand, seven hundred and six abstracts were examined. Following the selection process, 17 studies were included. The included studies consisted of 15 randomized controlled studies, while one study employed a quasi-experimental and one study a pre-post-test design. Thirteen studies provided strong evidence with regards to the quality of the studies due to the grade criteria; three studies provided fairly strong evidence and one study provided weaker evidence. The included studies were published between 1985 and 2015, with the majority published 2000 onwards. The studies were published within several disciplines such as psychology, social work, medicine and psychiatry, which illustrates that support for bereaved children is relevant for different professions. The interventions were based on various forms of support: group interventions for the children, family interventions, guidance for parents and camp activities for children. In fourteen studies, the interventions were directed at both children and their remaining parents. These studies revealed that when parents are supported, they can demonstrate an enhanced capacity to support their children. In three studies, the interventions were primarily directed at the bereaved children. The results showed positive between group effects both for children and caregivers in several areas, namely large effects for children’s traumatic grief and parent’s feelings of being supported; medium effects for parental warmth, positive parenting, parent’s mental health, grief discussions in the family, and children’s health. There were small effects on several outcomes, for example children’s post-traumatic stress disorder (PTSD) symptoms, anxiety, depression, self-esteem and behaviour problems. There were studies that did not show effects on some measures, namely depression, present grief, and for the subgroup boys on anxiety, depression, internalizing and externalizing.Conclusions: The results indicate that relatively brief interventions can prevent children from developing more severe problems after the loss of a parent, such as traumatic grief and mental health problems. Studies have shown positive effects for both children’s and remaining caregiver’s health. Further research is required including how best to support younger bereaved children. There is also a need for more empirically rigorous effect studies in this area.
20.	Birgisdóttir, Dröfn, et al. (författare) A novel care guide for personalised palliative care – a national initiative for improved quality of care 2021 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20, s. 1-12 Tidskriftsartikel (refereegranskat)abstract BackgroundEven when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide.MethodsThe Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings.ResultsAfter extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included.ConclusionsBased on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.
21.	Björk, Joar (författare) "It is very hard to just accept this" : a qualitative study of palliative care teams' ethical reasoning when patients do not want information 2024 Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 23:1 Tidskriftsartikel (refereegranskat)abstract BackgroundThe aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed.MethodsThe study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data.ResultsThe analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way.ConclusionsIn their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient’s wishes, or to provide information with the patient’s best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.
22.	Black, I, et al. (författare) Using motivational interviewing to facilitate death talk in end-of-life care: an ethical analysis 2018 Ingår i: BMC palliative care. - : Springer Science and Business Media LLC. - 1472-684X. ; 17:1, s. 51- Tidskriftsartikel (refereegranskat)
23.	Bylund-Grenklo, Tove, et al. (författare) Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers 2021 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20 Tidskriftsartikel (refereegranskat)abstract Background Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss. Methods We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression. Results Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent. Conclusion More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.
24.	Bylund-Grenklo, T, et al. (författare) Correction to: Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers 2021 Ingår i: BMC palliative care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1, s. 99- Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
25.	Bökberg, Christina, et al. (författare) Evaluation of person-centeredness in nursing homes after a palliative care intervention : pre- and post-test experimental design 2019 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 18, s. 1-10 Tidskriftsartikel (refereegranskat)abstract BackgroundThe needs of care based on palliative principles are stressed for all people with progressive and/or life-limiting conditions, regardless of age and the place in which care is provided. Person-centred palliative care strives to make the whole person visible and prioritizes the satisfaction of spiritual, existential, social, and psychological needs to the same extent as physical needs. However, person-centred palliative care for older persons in nursing homes seems to be sparse, possibly because staff in nursing homes do not have sufficient knowledge, skills, and training in managing symptoms and other aspects of palliative care.MethodsThis study aimed to evaluate whether an educational intervention had any effect on the staff's perception of providing person-centred palliative care for older persons in nursing homes. Methods: A knowledge-based palliative care intervention consisting of five 2-h seminars during a 6-month period was implemented at 20 nursing homes in Sweden. In total, 365 staff members were participated, 167 in the intervention group and 198 in the control group. Data were collected using two questionnaires, the Person-centred Care Assessment Tool (P-CAT) and the Person-Centred Climate Questionnaire (PCQ-S), answered before (baseline) and 3 months after (follow-up) the educational intervention was completed. Descriptive, comparative, and univariate logistical regression analyses were performed.ResultsBoth the intervention group and the control group revealed high median scores in all subscales at baseline, except for the subscale amount of organizational and environmental support in the P-CAT. The staff's high rating level of person-centred care before the intervention provides limited space for further improvements at follow-up.ConclusionThis study shows that staff perceived that managers' and the organization's amount of support to them in their everyday work was the only area for improvement in order to maintain person-centred care. The experiences among staff are crucial knowledge in understanding how palliative care can be made person-centred in spite of often limited resources in nursing homes. The dose and intensity of education activities of the intervention model need to be tested in future research to develop the most effective implementation model.Trial registrationNCT02708498. Date of registration 26 February 2016.
26.	Ciećwierska, Katarzyna, et al. (författare) Quality of life and depression in patients with amyotrophic lateral sclerosis – does the country of origin matter? 2023 Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 22:1 Tidskriftsartikel (refereegranskat)abstract Background: Given the inevitable relentless progressing nature of amyotrophic lateral sclerosis (ALS), it is essential to identify factors influencing patients’ wellbeing. The study aimed to prospectively assess factors influencing the quality of life (QoL) and depression in ALS patients compared to healthy controls (HCs) from Poland, Germany and Sweden and their relationship to socio-demographic and clinical factors.Methods: 314 ALS patients (120 from Poland, 140 from Germany, 54 from Sweden) and 311 age-, sex- and education-level-matched HCs underwent standardized interviews for quality of life, depression, functional status and pain.Results: Patients from all three countries showed similar levels of functional impairment (ALSFRS-R). Overall, ALS patients assessed their quality of life as lower compared to HCs (p < 0.001 for the anamnestic comparative self-assessment (ACSA), p = 0.002 for the Schedule for the evaluation of the subjective quality of life - SEIQoL- direct weighting (SEIQoL-DW). Also, the German and Swedish patients, but not the Polish, reported higher depression levels than the corresponding HCs (p < 0.001). Analysis of ALS groups revealed that functional impairment was related to a lower quality of life (ACSA) and higher depression levels among German ALS patients. Longer time since diagnosis predicted lower depression and (in male subjects) higher quality of life.Conclusions: ALS patients assess their quality of life and mood lower than healthy individuals within the studied countries. The relationships between clinical and demographic factors are moderated by country of provenance, which bears implications for the design and interpretation of scientific and clinical studies, which should reflect the complexity and heterogeneity of mechanisms determining QoL.
27.	Eklund, Rakel, 1986-, et al. (författare) The Family Talk Intervention for families when a parent is cared for in palliative care“ : potential effects from minor childrens perspectives 2020 Ingår i: BMC Palliative Care. - : Springer Nature. - 1472-684X. ; 19:1 Tidskriftsartikel (refereegranskat)abstract BackgroundChildren show long-term psychological distress if family communication and illness-related information are poor during and after a parent’s illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care.Methods This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation.ResultsThe children reported that FTI increased their knowledge about their parents’ illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family.ConclusionsChildren who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.
28.	Eklund, Rakel, et al. (författare) The family talk intervention in palliative care : a study protocol 2018 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 17:35 Tidskriftsartikel (refereegranskat)abstract Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.
29.	Eneslätt, Malin, et al. (författare) Same, same, but different? A longitudinal, mixed-methods study of stability in values and preferences for future end-of-life care among community-dwelling, older adults 2021 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 20 Tidskriftsartikel (refereegranskat)abstract BackgroundEnd-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults’ prioritizations and reasoning about values and preferences for future end-of-life care change over time.MethodsUsing a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5–12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants’ reasoning about card choices were explored with longitudinal qualitative analysis.ResultsStability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants’ health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning.ConclusionsLongitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals’ end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.
30.	Friedrichsen, Maria, et al. (författare) Cultures that collide : An ethnographic study of the introduction of a palliative care consultation team on acute wards 2021 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards.PURPOSE: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures.METHODS: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography.RESULTS: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care.CONCLUSION: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort.
31.	Friedrichsen, Maria, et al. (författare) The responsibility to quench thirst by providing drinks when a relative is dying spouses experience in specialist palliative home care 2023 Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 22:1 Tidskriftsartikel (refereegranskat)abstract Background Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses experience of this, leading to a knowledge gap in this area. Aim The aim of this study was to explore spouses experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. Methods A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results Three main themes emerged regarding spouses experiences of patients thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. Conclusions Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patients fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patients thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.
32.	Goodrose-Flores, C, et al. (författare) Appetite and its association with mortality in patients with advanced cancer - a Post-hoc Analysis from the Palliative D-study 2023 Ingår i: BMC palliative care. - 1472-684X. ; 22:1, s. 159- Tidskriftsartikel (refereegranskat)
33.	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.
34.	Gustafsson, Anna, et al. (författare) Oral health plays second fiddle in palliative care: an interview study with registered nurses in home healthcare 2021 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1 Tidskriftsartikel (refereegranskat)abstract Background: Oral health is crucial to the experience of well-being, and symptoms from the mouth are common at the end of life. Palliative care aims to identify and treat symptoms early to avoid unnecessary suffering and is thus an important part of nursing in home healthcare. The aim of this study was to illustrate the professional reflections of registered nurses about oral health amongst patients in palliative care, who are being cared for in a home healthcare setting.Results: The results showed oral health in end-of-life care, to be an area marked by responsibility and ethical considerations. This was seen in all four partly overlapping themes that emerged through the analysis: Oral health is easily overlooked in palliative care, Oral health is everybody’s but in reality nobody’s responsibility, Patient integrity can be an obstacle for oral health, and Focus on oral health is urgently needed. The mouth is often not included as part of the daily basic care routine, by the registered nurses and the home healthcare staff, until the patient is near end of life. Moreover, neither does the patient tell about symptoms from the mouth. The interpreted whole indicates that the registered nurses had a bad conscience about not doing what they are actually responsible for and ought to do.Conclusion: The oral health of patients at the end of life risks being forgotten or falling between the cracks, due to the nurses’ scattered tasks and unclear delimitations between their, and other professionals’ responsibilities. The responsibilities of registered nurses are also ethically demanding, since their intent to respect the patient’s integrity could mean that in some cases the patients does not allow them to help with oral health. To reduce the risk that oral health is overlooked, clearer demarcation and guidelines on the division of responsibilities are required. Routines that clearly implement early and recurring oral health assessments in home healthcare as well as continuing education updates on oral health and oral care are also needed.
35.	Hahne, Pia, et al. (författare) Changes in profesionals’ beliefs following a palliative care implementation programme at a surgical department: a qualitative evaluation 2017 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1 Tidskriftsartikel (refereegranskat)abstract Background One ambition regarding palliative care is that it should be more accessible to patients and families regardless of care setting. Previous studies show many difficulties and shortcomings in the care of patients with palliative care needs in acute care facilities, but also challenges regarding efforts to implement palliative care. The aim of this study is to evaluate how the implementation of palliative care, using a combination of integration and consultation strategies, can change beliefs regarding palliative care among professionals in a surgical department. Method In order to explore professionals’ experiential outcome of an educational implementation strategy, a before-after qualitative design was used. The study was based on three focus group discussions. Two discussions were conducted before introducing the implementation strategy and one was conducted after. The participants consisted of five nurses and two specialist surgeons from a surgical department in Sweden. The focus group discussions revealed a variety of different attitudes and beliefs, which were analysed using qualitative systematic text condensation. Results Beliefs regarding palliative care were identified in seven areas; the importance of palliative care, working methods in palliative care, team collaboration in palliative care, collegial support, discussions about diagnosis, symptoms at the end of life, and families of patients in palliative care. Changes in beliefs were seen in all areas except one: team collaboration in palliative care. Conclusion It is possible to change the beliefs of health care professionals in a surgical department regarding palliative care through the implementation of palliative knowledge. Beliefs were changed from an individual to a collective development where the group initiated a shared palliative working method. The changes observed were palliative care being described as more complex and participants differentiating between surgical care and palliative care.
36.	Hallgren, Jenny, et al. (författare) Health- and social care in the last year of life among older adults in Sweden 2020 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 19:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: In the last years of life, burden of disease and disability and need of health- and social care often increase. Social, functional and psychological factors may be important in regard to social- and health care utilization. This study aims to describe use of health- and social care during the last year of life among persons living in ordinary housing or in assisted living facilities. METHODS: A retrospective study examining health- and social care utilization during their last year of life, using a subsample from the Swedish twin registries individually linked to several Swedish national quality registries (NQR). Persons that died during 2008-2009 and 2011-2012 (n = 1518) were selected. RESULTS: Mean age at death was 85.9 ± 7.3 (range 65.1-109.0). Among the 1518 participants (women n = 888, 58.5%), of which 741 (49%) were living in assisted living facilities and 1061 (69.9%) had at least one hospitalization during last year of life. The most common causes of death were cardiovascular disease (43.8%) and tumors (15.3%). A multivariable logistic regression revealed that living in ordinary housing, younger age and higher numbers of NQR's increased the likelihood of hospitalization. CONCLUSIONS: Persons in their last year of life consumed high amount of health- and social care although 12% did not receive any home care. Married persons received less home care than never married. Persons living in ordinary housing had higher numbers of hospitalizations compared to participants in assisted living facilities. Older persons and persons registered in fewer NQR's were less hospitalized.
37.	Hamdan Alshehri, Hanan, et al. (författare) Factors influencing the integration of a palliative approach in intensive care units: a systematic mixed-methods review. 2020 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1 Tidskriftsartikel (refereegranskat)abstract While a palliative approach is generally perceived to be an integral part of the intensive care unit (ICU), the provision of palliative care in this setting is challenging. This review aims to identify factors (barriers and facilitators) influencing a palliative approach in intensive care settings, as perceived by health care professionals.A systematic mixed-methods review was conducted. Multiple electronic databases were used, and the following search terms were utilized: implementation, palliative care, and intensive care unit. In total, 1843 articles were screened, of which 24 met the research inclusion/exclusion criteria. A thematic synthesis method was used for both qualitative and quantitative studies.Four key prerequisite factors were identified: (a) organizational structure in facilitating policies, unappropriated resources, multi-disciplinary team involvement, and knowledge and skills; (b) work environment, including physical and psychosocial factors; (c) interpersonal factors/barriers, including family and patients' involvement in communication and participation; and (d) decision-making, e.g., decision and transition, goal conflict, multidisciplinary team communication, and prognostication.Factors hindering the integration of a palliative approach in an intensive care context constitute a complex interplay among organizational structure, the care environment and clinicians' perceptions and attitudes. While patient and family involvement was identified as an important facilitator of palliative care, it was also recognized as a barrier for clinicians due to challenges in shared goal setting and communication.
38.	Hedman, Christel, et al. (författare) Pain prevalence and pain relief in end-of-life care : a national registry study 2024 Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 23:1 Tidskriftsartikel (refereegranskat)abstract Background: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce.Methods: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used.Results: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17–21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73–87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group.Conclusions: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying.
39.	Henoch, Ingela, 1956, et al. (författare) Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study 2021 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1 Tidskriftsartikel (refereegranskat)abstract Background In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palliative care is seldom offered to patients with COPD; they more often receive end of life care in hospitals. Furthermore, symptoms, symptom relief and care activities in the last week of life for COPD patients are rarely studied. The aim of this study was to compare patient and care characteristics in late stage COPD patients treated in specialized palliative care (SPC) versus hospital. Methods Two nationwide registers were merged, the Swedish National Airway Register (SNAR) and the Swedish Register of Palliative Care (SRPC). Patients with COPD and < 50% of predicted forced expiratory volume in 1 s (FEV1), who had died in inpatient or outpatient SPC (n = 159) or in hospital (n = 439), were identified. Clinical COPD characteristics were extracted from the SNAR, and end of life (EOL) care characteristics from the SRPC. Descriptive statistics were used to describe the sample and the registered care and treatments. Independent samples t-test, Mantel-Haenszel chi-square test and Fisher's exact test was used to compare variables. To examine predictors of place of death, bivariate and multivariate logistic regression analyses were performed with a dependent variable with demographic and clinical variables used as independent variables. Results The patients in hospitals were older and more likely to have heart failure or hypertension. Pain was more frequently reported and relieved in SPC than in hospitals (p = 0.001). Rattle, anxiety, delirium and nausea were reported at similar frequencies between the settings; but rattle, anxiety, delirium, and dyspnea were more frequently relieved in SPC (all p < 0.001). Compared to hospital, SPC was more often the preferred place of care (p < 0.001). In SPC, EOL discussions with patients and families were more frequently held than in hospital (p < 0.001). Heart failure increased the probability of dying in hospital while lung cancer increased the probability of dying in SPC. Conclusion This study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.
40.	Hilding, Ulrika, et al. (författare) Striving for a balance between leading and following the patient and family - nurses' strategies to facilitate the transition from life-prolonging care to palliative care : an interview study 2018 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: The transition from life-prolonging to palliative care (PC) can be challenging often characterized by psychical, physiological, social and existential changes. Knowledge of how to support the patient and family in this specific care phase is lacking, and this area needs to be further explored. The aim of this study was to investigate strategies that registered nurses (RNs) use to ease the transition from life-prolonging care to PC for patients with incurable disease.METHODS: The study has a descriptive design. Fourteen RNs working in a specialized PC unit were interviewed. The data were analysed using content analysis.RESULTS: The RNs' strategies can be described under the categories "Getting to know the patient and creating a relationship", "Providing support", "Adapting to individuals' needs" and "Enabling conversations".CONCLUSION: The findings show that the RNs in this population used strategies that not only took time but also required knowledge about the transition process and required the ability to identify and meet patients' and families' unique needs. Patients' difficult and exposed situation needs to be addressed through a structured follow-up after informing about the change from life-prolonging care to PC. RNs have a unique role of supporting both the patient and the family in the transition from life-prolonging care to PC for patients with incurable disease.
41.	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.
42.	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.
43.	Holm, Maja, et al. (författare) Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers 2015 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 14 Tidskriftsartikel (refereegranskat)abstract Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
44.	Holm, Maja, et al. (författare) Quality of life in men with metastatic prostate cancer in their final years before death : a retrospective analysis of prospective data 2018 Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 17 Tidskriftsartikel (refereegranskat)abstract Background: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.Methods: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6–18 months and > 18 months before death.Results: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.Conclusion: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.
45.	Holmberg, Bodil, et al. (författare) Barriers to and facilitators of ethical encounters at the end of life in a nursing home : An ethnographic study 2022 Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 21:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home.METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group.RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort.CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.
46.	Holmen, Heidi, et al. (författare) Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review 2023 Ingår i: BMC Palliative Care. - 1472-684X. ; 22:1 Tidskriftsartikel (refereegranskat)abstract Background: Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC). Methods: Arksey and O’Malley’s 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published. Results: Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions. Conclusion: The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC. Trial registration: Review registration: (https://osf.io/yfch2/) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).
47.	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.
48.	Hov, Reidun, et al. (författare) A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study 2020 Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 19:1, s. 1-12 Tidskriftsartikel (refereegranskat)abstract Background As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. Aim To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. Methods A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. Results Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. Conclusions There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
49.	Kittelsen, Trine Brun, et al. (författare) It's about living a normal life : parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study 2024 Ingår i: BMC Palliative Care. - 1472-684X. ; 23:1, s. 92-92 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. METHODS: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. RESULTS: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. CONCLUSIONS: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.
50.	Lindskog, Magnus, et al. (författare) Acute healthcare utilization in end-of-life among Swedish brain tumor patients - a population based register study 2022 Ingår i: BMC Palliative Care. - : Springer Nature. - 1472-684X. ; 21 Tidskriftsartikel (refereegranskat)abstract Background: Patients with progressive primary brain tumors commonly develop a spectrum of physical as well as cognitive symptoms. This places a large burden on family members and the condition's complexity often requires frequent health care contacts. We investigated potential associations between sociodemographic or socioeconomic factors, comorbidity or receipt of specialized palliative care (SPC) and acute healthcare utilization in the end-of-life (EOL) phase.Methods: A population-based retrospective study of all adult patients dying with a primary malignant brain tumor as main diagnosis in 2015-2019 in the Stockholm area, the most densely populated region in Sweden (N = 780). Registry data was collected from the Stockholm Region ' s central data warehouse (VAL). Outcome variables included emergency room (ER) visits or hospitalizations in the last month of life, or death in acute hospitals. Possible explanatory variables included age, sex, living arrangements (residents in nursing homes versus all others), Charlson Comorbidity Index, socio-economic status (SES) measured by Mosaic groups, and receipt of SPC in the last three months of life. T-tests or Wilcoxon Rank Sum tests were used for comparisons of means of independent groups and Chi-square test for comparison of proportions. Associations were tested by univariable and multivariable logistic regressions calculating odds ratios (OR).Results: The proportion of patients receiving SPC increased gradually during the last year of life and was 77% in the last 3 months of life. Multivariable analyses showed SPC to be equal in relation to sex and SES, and inversely associated with age (p <= 0.01), comorbidity (p = 0.001), and nursing home residency (p < 0.0001). Unplanned ER visits (OR 0.41) and hospitalizations (OR 0.45) during the last month of life were significantly less common among patients receiving SPC, in multivariable analysis (p < 0.001). In accordance, hospital deaths were infrequent in patients receiving SPC (2%) as compared to one in every four patients without SPC (p < 0.0001). Patients with less comorbidity had lower acute healthcare utilization in the last month of life (OR 0.35 to 0.65), whereas age or SES was not significantly associated with acute care utilization. Female sex was associated with a lower likelihood of EOL hospitalization (OR 0.72). Nursing home residency was independently associated with a decreased likelihood of EOL acute healthcare utilization including fewer hospital deaths (OR 0.08-0.54).Conclusions: Receipt of SPC or nursing home residency was associated with lower acute health care utilization among brain tumor patients. Patients with more severe comorbidities were less likely to receive SPC and required excess acute healthcare in end-of-life and therefore constitute a particularly vulnerable group.

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Författare/redaktör: Öhlén, Joakim, 1958 (8); Sandgren, Anna, 1970 ... (7); Wilde Larsson, Bodil ... (5); Fürst, Carl-Johan (5); Kreicbergs, Ulrika (5); Lundström, Staffan (5); visa fler...; Alvariza, Anette (5); Strang, Peter (4); Castor, Charlotte (4); Ahlström, Gerd (4); Holm, Maja (4); Jaarsma, Tiny (3); Rystedt, Ingrid, 196 ... (3); Larsson, Maria (3); Blomberg, Karin, 197 ... (3); Friedrichsen, Maria (3); Årestedt, Kristofer, ... (3); Lövgren, Malin (3); Persson, Magnus (2); Beck, Ingela, 1965- (2); Bjorkhem-Bergman, L (2); Nyberg, T (2); Steineck, Gunnar, 19 ... (2); Axelsson, Bertil (2); Rasmussen, Birgit H (2); Wennman-Larsen, Agne ... (2); Helgason, AR (2); Hermerén, Göran (2); Klarare, Anna (2); Henoch, Ingela, 1956 (2); Bökberg, Christina (2); Benzein, Eva, 1951- (2); Behm, Lina (2); Wallerstedt, Birgitt ... (2); Lövgren, Malin, 1980 ... (2); Skokic, V (2); Lindskog, Magnus (2); Fransson, Per (2); Rasmussen, Birgit (2); Mårtensson, Jan, 196 ... (2); Krevers, Barbro (2); Liljeroos, Maria (2); Werkander Harstäde, ... (2); Brännström, Margaret ... (2); Kuźma-Kozakiewicz, M ... (2); Ciećwierska, Katarzy ... (2); Ludolph, Albert C. (2); Lulé, Dorothée (2); Sjöberg, Marina (2); Helgesson, Gert (2); visa färre...

Lärosäte: Karolinska Institutet (26); Lunds universitet (23); Linnéuniversitetet (16); Marie Cederschiöld högskola (16); Göteborgs universitet (13); Uppsala universitet (12); visa fler...; Umeå universitet (11); Linköpings universitet (8); Sophiahemmet Högskola (8); Karlstads universitet (7); Högskolan Kristianstad (6); Örebro universitet (5); Mittuniversitetet (4); Jönköping University (3); Malmö universitet (2); Luleå tekniska universitet (1); Högskolan i Gävle (1); Högskolan Väst (1); Högskolan i Skövde (1); visa färre...

Språk: Engelska (91)

Forskningsämne (UKÄ/SCB): Medicin och hälsovetenskap (82); Samhällsvetenskap (2); Humaniora (2)

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