Sports and McArdle Disease (Glycogen Storage Disease Type V): Danger or Therapy?

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

Palliative Care Education for Everybody

This chapter is about palliative care education for everybody including both professional health care workers and all citizens. A six-step approach to life-long palliative care education (as first described by Bollig in 2008 and published as a conference poster in 2009 and a book in German in 2010) will be proposed and discussed. The chapter will summarize the public knowledge approach to palliative care implementation (Bollig 2008) and other strategies to educate the public about palliative care. The concept of Last Aid courses for citizens will be introduced, and international experiences with this concept will be discussed. A possible combination of Last Aid courses and the compassionate community approach might improve palliative care provision in the community

Effects of first aid training in the kindergarten - a pilot study

<p>Abstract</p> <p>Objective</p> <p>Children can be the only persons present in an emergency situation. Aim of the study was to evaluate the effects of a first aid course for 4-5-year-old kindergarten children given by a first aid instructor and kindergarten teachers.</p> <p>Methods</p> <p>A mixed methods approach using both quantitative and qualitative methods was used to investigate the effects of teaching first aid in the kindergarten in the present study. 10 kindergarten children at the age of 4-5 years were included in a pilot-study, 5 girls and 5 boys. Three of them were four years and seven were five years old. Two months after completion of the first aid course children were tested in a scenario where the children had to provide first aid to an unconscious victim after a cycle accident. The next seven months the children were followed by participant observation.</p> <p>Results</p> <p>The findings suggest that 4-5-year-old children are able to learn and apply basic first aid. Tested two months after course completion 70% of the children assessed consciousness correctly and knew the correct emergency telephone number; 60% showed correct assessment of breathing and 40% of the participants accomplished the other tasks (giving correct emergency call information, knowledge of correct recovery position, correct airway management) correctly. Many of the children showed their capabilities to do so in a first aid scenario although some participants showed fear of failure in the test scenario. In an informal group testing most of these children could perform first aid measures, too. Teaching first aid also lead to more active helping behaviour and increased empathy in the children.</p> <p>Conclusion</p> <p>Kindergarten children aged 4-5 years can learn basic fist aid. First aid training should start in the kindergarten.</p

Nothing to complain about? : residents’ and relatives’ viewson a "good life" and ethical challenges in nursing homes

Background: Nursing home residents are a vulnerable population. Most of them suffer from multimorbidity, 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 focusgroup 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 three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to "everyday ethical issues.

Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

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 three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.

Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

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 three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.

Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial

Background: The 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. Methods: A 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. Results: A 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 (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes. Conclusion: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers’ experience of the interaction with healthcare professionals. Trial registration number: NCT03466580

Ethical challenges, decision-making and end-of-life care in nursing homes

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

Is There a Need for Cultural Adaptation of the Last Aid Course?&mdash;A Mixed-Methods Study across the Danish-German Border

Last Aid courses (LAC) have been established in 20 countries in Europe, Australia, and America to improve the public discourse about death and dying and to empower people to contribute to end-of-life care in the community. A mixed-methods approach was used to investigate the views of LAC participants about the course and cultural differences in relation to care and nursing at the end of life in the border region of Germany and Denmark. One-day workshops were held, including Last Aid courses in German and Danish, focus group interviews, and open discussions by the participants. The results show that almost all participants appreciate the LAC as an option to talk and learn about death and end-of-life care. The informants find individual differences more important than cultural differences in end-of-life care but describe differences connected to regulations and organization of services across the border. Suggestions for adaptation and improvement of the LAC include the topics of organization and support across the border, religions, and cultures, and supporting people in grief. The findings of the study will inform a revision of the Last Aid curriculum and future projects across the border and will help to include the views of minorities

Public Health Palliative Care and Public Palliative Care Education

This Special Issue, &ldquo;Public Health Palliative Care (PHPC) and Public Palliative Care Education (PPCE)&rdquo;, highlights recent advances and challenges in PHPC and PPCE [...