BackgroundThe Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improv... more BackgroundThe Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.MethodsA stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.ResultsA total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers’ well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens ...
Background: Many nursing home residents suffer from multimorbidity, frailty and dementia. A numbe... more Background: Many nursing home residents suffer from multimorbidity, frailty and dementia. A number of ethical challenges are connected to living and dying in nursing homes. Objective/purpose: This thesis investigates ethical challenges, decision-making and end-oflife care in nursing homes. The research focuses on the views of residents, relatives and staff on these topics. Materials and methods: The studies relied on a mixed methods approach. Qualitative research was based on qualitative description and interpretive description. In-depth interviews with nursing home residents and focus group interviews with relatives and nursing home staff were conducted. Questionnaires were used to collect data on ethical challenges in nursing homes and to document ethics discussions in five institutions in Austria, Germany and Norway. Results: From the perspective of residents and relatives, ethical challenges in nursing homes are mostly connected to everyday ethical issues. Residents trust relatives, physicians and nurses to make important decisions on their behalf, but many relatives do not know the resident’s wishes, and experience decision making as a burden. Many staff members describe ethical challenges as a burden and appreciate systematic ethics work. The most frequent ethical challenges are lack of resources, end-of-life issues, advance care planning and coercion. Ethics meetings can help to reach consensus in over three-quarters of cases. To implement systematic ethics work in nursing homes, time for reflection, ethics education and support from the management are needed. Residents were entirely absent in the documented ethics meetings. Conclusion and consequences: Both end-of-life issues and everyday ethical challenges are important in nursing homes. As relatives are often insecure about the wishes of residents, preparatory conversations about treatment preferences and advance care planning should be offered. Systematic ethics work should be implemented in all nursing homes. The regular participation of relatives, physicians and residents in ethics discussions should be encouraged. The participation of residents may strengthen their feelings of autonomy and dignity. Future perspectives: Further research should aim to investigate strategies to improve the participation of residents in ethics discussions. Research into the views of residents with cognitive impairment is lacking, due to methodological and ethical barriers. The advantages and disadvantages of different models for systematic ethics work in nursing homes need to be explored in more detail
The second International Last Aid Conference Online was held on 30th October 2020 with 174 partic... more The second International Last Aid Conference Online was held on 30th October 2020 with 174 participants from 18 countries. The main topics of the conference were the social impact of palliative care, public palliative care education (PPCE) and experiences with Last Aid Courses from different countries. Invited lectures and submitted abstracts on these topics highlighted the need for PPCE. The experiences with Last Aid Courses for both adults and children, as well as the Online Last Aid courses that were developed during the COVID-19 pandemic were presented. This conference report provides an overview of the topics and the content of the presentations.
(2021) Citizens appreciate talking about death and learning end-of-life care-a mixed-methods stud... more (2021) Citizens appreciate talking about death and learning end-of-life care-a mixed-methods study on views and experiences of 5469 Last Aid Course participants,
McArdle disease (glycogen storage disease type V) is an inborn error of energy metabolism in the ... more McArdle disease (glycogen storage disease type V) is an inborn error of energy metabolism in the muscle. The effects of McArdle disease on physical performance have similarities with the metabolic state of marathon runners after glycogen depletion and can therefore be seen as a nature's experiment in the field of sports medicine. Many patients with McArdle disease avoid sports in general because physical activity usually leads to muscle pain and muscle cramps. Often patients therefore regard physical activity as both painful and possibly dangerous. This chapter is about the advantages and possible risks of sports for patients with McArdle disease. The scientific literature will be discussed highlighting both endurance and muscle strength exercise. It will discuss the differences of aerobic and anaerobic exercise in individuals suffering from McArdle disease. Complications as rhabdomyolysis, myoglobinuria, kidney failure, and malignant hyperthermia will be discussed. The chapter will summarize the current knowledge about the possible dangers versus possible benefits of sports for patients with McArdle disease. A summary of recommendations for physical exercise and training for McArdle patients will be provided.
SummaryDie Mehrzahl der Menschen in Deutschland stirbt in Krankenhäusern und Pflegeheimen, obwohl... more SummaryDie Mehrzahl der Menschen in Deutschland stirbt in Krankenhäusern und Pflegeheimen, obwohl sich viele Menschen wünschen zuhause zu sterben. Der Letzte Hilfe Kurs soll die Bevölkerung informieren und befähigen schwerkranke und sterbende Menschen begleiten und umsorgen zu können. Der Letzte Hilfe Kurs besteht aus 4 Modulen zu den Themen Begleiten und Umsorgen Sterbender; Vorsorgen und Entscheiden; Symptome lindern und Abschied nehmen. Die Kurse werden in der Bevölkerung mit großem Interesse aufgenommen. Die flächendeckende Implementierung von Letzte Hilfe Kursen kann helfen, die Bevölkerung zu informieren und möglicherweise dazu beitragen, mehr Menschen ein Sterben zuhause zu ermöglichen.
Figure 1. Allergic skin reaction to Norspan®. DOI http://dx.doi.org/10.13070/rs.en.1.860 Date 201... more Figure 1. Allergic skin reaction to Norspan®. DOI http://dx.doi.org/10.13070/rs.en.1.860 Date 2014-06-04 Cite as Research 2014;1:860 License CC-BY Possible anaphylactic reaction to transdermal buprenorphine: a case report Georg Bollig1, 2 (georg dot bollig at helios-kliniken dot de) #, Andreas Gremmelt1 1 Department of Anesthesiology, Intensive Care, Palliative Medicine and Pain Therapy, HELIOS Klinikum Schleswig, Germany. 2 Department of Clinical Medicine, University of Bergen, Norway # : corresponding author Transdermal buprenorphine has been used in pain therapy since 2001. In some patients allergic reactions to transdermal buprenorphine have been described in the literature. A case report of a severe allergic reaction to transdermal buprenorphine is presented and a review of the current literature on this topic is given. Allergic reactions to transdermal buprenorphine can occur and one should be aware of such side effects. Severe reactions do need close attention and should be registered. Introduction Buprenorphine has been used for the treatment of pain for many years and transdermal buprenorphine patches have been established as treatment for chronic pain in Europe since 2001. Transdermal buprenorphine has been used for both cancer and non-cancer patients as well as neuropathic pain [1] [2] [3]. Transdermal patches are available from different pharmaceutical companies with doses ranging from 5 μg/h up to 70 μg/h. Even high doses of transdermal buprenorphine up to 210 μg/h administered for pain management in cancer patients have been described to be well tolerated [4] [5]. Skin reactions as erythema, pruritus and contact dermatitis are known side effects with transdermal buprenorphine [1] [6]. To our knowledge severe systemic allergic reactions or anaphylaxis due to transdermal buprenorphine have not been reported previously. The aim of this case report is to describe a possible anaphylactic reaction due to transdermal buprenorphine and to provide an overview of allergic reactions to transdermal buprenorphine reported in the literature.
Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-mo... more Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from...
BackgroundThe Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improv... more BackgroundThe Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.MethodsA stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.ResultsA total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers’ well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens ...
Background: Many nursing home residents suffer from multimorbidity, frailty and dementia. A numbe... more Background: Many nursing home residents suffer from multimorbidity, frailty and dementia. A number of ethical challenges are connected to living and dying in nursing homes. Objective/purpose: This thesis investigates ethical challenges, decision-making and end-oflife care in nursing homes. The research focuses on the views of residents, relatives and staff on these topics. Materials and methods: The studies relied on a mixed methods approach. Qualitative research was based on qualitative description and interpretive description. In-depth interviews with nursing home residents and focus group interviews with relatives and nursing home staff were conducted. Questionnaires were used to collect data on ethical challenges in nursing homes and to document ethics discussions in five institutions in Austria, Germany and Norway. Results: From the perspective of residents and relatives, ethical challenges in nursing homes are mostly connected to everyday ethical issues. Residents trust relatives, physicians and nurses to make important decisions on their behalf, but many relatives do not know the resident’s wishes, and experience decision making as a burden. Many staff members describe ethical challenges as a burden and appreciate systematic ethics work. The most frequent ethical challenges are lack of resources, end-of-life issues, advance care planning and coercion. Ethics meetings can help to reach consensus in over three-quarters of cases. To implement systematic ethics work in nursing homes, time for reflection, ethics education and support from the management are needed. Residents were entirely absent in the documented ethics meetings. Conclusion and consequences: Both end-of-life issues and everyday ethical challenges are important in nursing homes. As relatives are often insecure about the wishes of residents, preparatory conversations about treatment preferences and advance care planning should be offered. Systematic ethics work should be implemented in all nursing homes. The regular participation of relatives, physicians and residents in ethics discussions should be encouraged. The participation of residents may strengthen their feelings of autonomy and dignity. Future perspectives: Further research should aim to investigate strategies to improve the participation of residents in ethics discussions. Research into the views of residents with cognitive impairment is lacking, due to methodological and ethical barriers. The advantages and disadvantages of different models for systematic ethics work in nursing homes need to be explored in more detail
The second International Last Aid Conference Online was held on 30th October 2020 with 174 partic... more The second International Last Aid Conference Online was held on 30th October 2020 with 174 participants from 18 countries. The main topics of the conference were the social impact of palliative care, public palliative care education (PPCE) and experiences with Last Aid Courses from different countries. Invited lectures and submitted abstracts on these topics highlighted the need for PPCE. The experiences with Last Aid Courses for both adults and children, as well as the Online Last Aid courses that were developed during the COVID-19 pandemic were presented. This conference report provides an overview of the topics and the content of the presentations.
(2021) Citizens appreciate talking about death and learning end-of-life care-a mixed-methods stud... more (2021) Citizens appreciate talking about death and learning end-of-life care-a mixed-methods study on views and experiences of 5469 Last Aid Course participants,
McArdle disease (glycogen storage disease type V) is an inborn error of energy metabolism in the ... more McArdle disease (glycogen storage disease type V) is an inborn error of energy metabolism in the muscle. The effects of McArdle disease on physical performance have similarities with the metabolic state of marathon runners after glycogen depletion and can therefore be seen as a nature's experiment in the field of sports medicine. Many patients with McArdle disease avoid sports in general because physical activity usually leads to muscle pain and muscle cramps. Often patients therefore regard physical activity as both painful and possibly dangerous. This chapter is about the advantages and possible risks of sports for patients with McArdle disease. The scientific literature will be discussed highlighting both endurance and muscle strength exercise. It will discuss the differences of aerobic and anaerobic exercise in individuals suffering from McArdle disease. Complications as rhabdomyolysis, myoglobinuria, kidney failure, and malignant hyperthermia will be discussed. The chapter will summarize the current knowledge about the possible dangers versus possible benefits of sports for patients with McArdle disease. A summary of recommendations for physical exercise and training for McArdle patients will be provided.
SummaryDie Mehrzahl der Menschen in Deutschland stirbt in Krankenhäusern und Pflegeheimen, obwohl... more SummaryDie Mehrzahl der Menschen in Deutschland stirbt in Krankenhäusern und Pflegeheimen, obwohl sich viele Menschen wünschen zuhause zu sterben. Der Letzte Hilfe Kurs soll die Bevölkerung informieren und befähigen schwerkranke und sterbende Menschen begleiten und umsorgen zu können. Der Letzte Hilfe Kurs besteht aus 4 Modulen zu den Themen Begleiten und Umsorgen Sterbender; Vorsorgen und Entscheiden; Symptome lindern und Abschied nehmen. Die Kurse werden in der Bevölkerung mit großem Interesse aufgenommen. Die flächendeckende Implementierung von Letzte Hilfe Kursen kann helfen, die Bevölkerung zu informieren und möglicherweise dazu beitragen, mehr Menschen ein Sterben zuhause zu ermöglichen.
Figure 1. Allergic skin reaction to Norspan®. DOI http://dx.doi.org/10.13070/rs.en.1.860 Date 201... more Figure 1. Allergic skin reaction to Norspan®. DOI http://dx.doi.org/10.13070/rs.en.1.860 Date 2014-06-04 Cite as Research 2014;1:860 License CC-BY Possible anaphylactic reaction to transdermal buprenorphine: a case report Georg Bollig1, 2 (georg dot bollig at helios-kliniken dot de) #, Andreas Gremmelt1 1 Department of Anesthesiology, Intensive Care, Palliative Medicine and Pain Therapy, HELIOS Klinikum Schleswig, Germany. 2 Department of Clinical Medicine, University of Bergen, Norway # : corresponding author Transdermal buprenorphine has been used in pain therapy since 2001. In some patients allergic reactions to transdermal buprenorphine have been described in the literature. A case report of a severe allergic reaction to transdermal buprenorphine is presented and a review of the current literature on this topic is given. Allergic reactions to transdermal buprenorphine can occur and one should be aware of such side effects. Severe reactions do need close attention and should be registered. Introduction Buprenorphine has been used for the treatment of pain for many years and transdermal buprenorphine patches have been established as treatment for chronic pain in Europe since 2001. Transdermal buprenorphine has been used for both cancer and non-cancer patients as well as neuropathic pain [1] [2] [3]. Transdermal patches are available from different pharmaceutical companies with doses ranging from 5 μg/h up to 70 μg/h. Even high doses of transdermal buprenorphine up to 210 μg/h administered for pain management in cancer patients have been described to be well tolerated [4] [5]. Skin reactions as erythema, pruritus and contact dermatitis are known side effects with transdermal buprenorphine [1] [6]. To our knowledge severe systemic allergic reactions or anaphylaxis due to transdermal buprenorphine have not been reported previously. The aim of this case report is to describe a possible anaphylactic reaction due to transdermal buprenorphine and to provide an overview of allergic reactions to transdermal buprenorphine reported in the literature.
Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-mo... more Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from...
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