Die besonderen Lebenslagen von Frauen mit Behinderung im Alter

'Erstmals erreichen Kohorten lebenslang behinderter Frauen und Männer das Rentenalter, da infolge des Euthanasie-Programms in der NS-Zeit von 1943 bis zum Ende des Regimes im Mai 1945 behinderte Menschen systematisch ermordet wurden. Die Erfahrungen mit älter werdenden und alten behinderten Menschen sind daher noch recht begrenzt. Geschlecht und Alter behalten eine zentrale Bedeutung für die Charakterisierung der Lebenslage behinderter Menschen, eine Mehrfachdiskriminierung behinderter Frauen ist in vielen Lebensbereichen nachweisbar. In der wissenschaftlichen Literatur zeigen sich Forschungsdesiderata: besonders Frauen mit Behinderung im Alter werden noch nicht angemessen wahrgenommen, ihre Problemlagen weitestgehend vernachlässigt, dabei ist evident, dass Benachteiligungen behinderter Frauen (und Mädchen) im Lebensverlauf kumulieren und durch die Betrachtung der Dimension Alter an Stärke zunehmen. In diesem Artikel werden die besonderen Bedürfnislagen von Frauen mit Behinderungen im Alter anhand vereinzelter Studien dargestellt. Des Weiteren wird die Relevanz dieser Thematik für die Forschung und Praxis herausgearbeitet.' (Autorenreferat

Barriers and drivers of public engagement in palliative care, Scoping review

Background The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC.Methods Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. Keywords: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators.Results Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities.Conclusion Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated

Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085

Vestibular disorders

Background: Recent research findings have improved the understanding of the diagnosis, pathophysiology, genetics, etiology, and treatment of peripheral, central, and functional vestibular vertigo syndromes. Method: A literature search, with special attention to the current classification, treatment trials, Cochrane analyses, and other meta-analyses. Results: There are internationally accepted diagnostic criteria for benign positional paroxysmal vertigo, Menière’s disease, bilateral vestibulopathy, vestibular paroxysmia, and functional dizziness. Whether an acute vestibular syndrome is central or peripheral can usually be determined rapidly on the basis of the history and the clinical examination. “Cerebellar vertigo” is a clinically important entity. For bilateral vestibulopathy, balance training is an effective treatment. For Menière’s disease, preventive treatment with betahistine (48 mg and 144 mg per day) is not superior to placebo. For vestibular paroxysmia, oxcarbazepine has been shown to be effective. Treatments that are probably effective for functional dizziness include vestibular rehabilitation, cognitive behavioral therapy, and serotonin reuptake inhibitors. Conclusion: The diagnostic assessment of vestibular syndromes is much easier for clinicians now that it has been internationally standardized. There is still a lack of randomized, controlled trials on the treatment of, for example, Menière’s disease, vestibular migraine, and “cerebellar vertigo.

The effects of confronting one's own end of life on older individuals and those with a life-threatening disease: A systematic literature review

Background: Awareness of the impending end of one's life can pose profound existential challenges, thereby impairing well-being. Confronting one's own end of life may be an approach to meet the psychological needs and consequently enhance overall well-being. Different approaches of confrontation have been evaluated positively using measures of psychosocial comfort. To date, there exists no systematic overview on the different ways of confrontation (e.g. psychosocial or individual coping approaches). Aim: To synthesize the existing knowledge on the effects of different approaches of confronting one's own end of life on older individuals and those with a life-threatening disease. Design: A systematic review of quantitative, qualitative, and mixed-methods full research reports was conducted. The retrieved studies were screened and appraised for methodological quality by two independent reviewers based on MMAT and CASP. The findings were synthesized narratively using the meta-summary technique by Sandelowski and Barroso. Data sources: Medline, PsycINFO, and Web of Science were searched from inception to 12/2020. Results: N = 49 studies reported on different approaches of confronting one's own end of life, including psychosocial interventions, meaning-enhancing approaches, educational programs, and learning from lived experiences. The results suggest a clear trend toward beneficial effects on psychosocial comfort (e.g. anxiety, sense of meaning, well-being). Conclusion: Low-threshold opportunities of confrontation have the potential to improve well-being and should be emphasized in practical implementation. The results can serve as a comprehensive basis for future research aiming to investigate the determinants of psychosocial comfort for people nearing the end of life

How to Talk About Attitudes Toward the End of Life: A Qualitative Study

To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting early, including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered

Follow -Ups with callers of a palliative and hospice care hotline for severely affected multiple sclerosis patients: Evaluation of its impact

Background: Palliative and Hospice Care (PHC) focuses on improving quality of life for anyone who has a serious illness. Multiple Sclerosis (MS) patients have significant PHC needs, yet PHC still mostly attends to cancer patients. The implemented and evaluated nationwide PHC -MS hotline (Strupp et al., 2017) appeared to provide a useful service to patients. Objectives: Prospective follow-up study to evaluate the impact of the hotline and analyse challenges and possible barriers to integrating PHC services. Methods: Information on implementing PHC services was gathered through follow-up hotline consultations utilising a standardised documentary sheet. Data was analysed descriptively and several individual cases are presented. Results: Of 303 calls to the hotline (54.5% female, mean age 51 years, 87.7% chronic progressive MS, mean duration of illness 17 years, median EDSS 8), for 84 (27.7%) PHC services were indicated. Of these 84 patients, 32 agreed to follow-up calls which were conducted at least once. For 6 (19%) patients, PHC service integration was successful. For 5 (16%) PHC was refused. For 5 (16%) PHC did not fit current patient needs, and for 7 (22%) PHC has not yet been contacted by patients (or caregivers). For a further 9 (28%) follow-ups revealed that no more consultation was possible (e.g., caller lost to follow-up). Conclusion: The PHC approach and its services as well as legislation are still highly focused on cancer care, although patients with long-term neurological conditions would likely benefit greatly from them

My life became more meaningful: confronting one's own end of life and its effects on well-being-a qualitative study

Background: The perception of being closer to death can be experienced due to old age or life-limiting diseases, and can pose profound existential challenges. Actively confronting death-related issues and existential questions may increase psychosocial comfort and stimulate personal growth, whereas dysfunctional coping may lead to existential distress. To date, research on individual and (semi-)professional approaches to confronting the own end of life and the effects on one's well-being remain scarce. Therefore, the aim of this study was to explore individual strategies and wishes in order to derive ideas for appropriate support concepts. Methods: Twenty semi-structured interviews were conducted with people over the age of 80 (n =11) and with a life-limiting disease (n = 10). The interviews were transcribed verbatim and independently coded by two researchers according to Braun and Clarke's thematic analysis approach. Results: While the use of (semi-)professional approaches (e.g., therapeutic support) to confronting existential questions in the shape of one's impending death was rare, individual coping strategies did have a positive impact on psychosocial comfort. There were hardly any significant differences between the participants aged 80 and over and those with a life-limiting disease in terms of individual coping strategies or how they approached the ends of their lives. Both groups reported that theoretical education, preparing for the ends of their lives (e.g., funerals), talking about death-related topics, reflecting on death-related topics, and contemplating death in a spiritual sense had positive effects on their assurance, self-determination and relief. The necessity of confrontation and a desire for low-threshold, accessible and flexible services to meet their existential and spiritual needs were highlighted. Conclusions: There is both a desire and a need for the addressing of existential questions. Outside of private contexts, however, the participants possessed little awareness of support services that focused on confronting end-of-life issues, and rarely used such services. Efforts to raise awareness for psychosocial and spiritual needs should be implemented within the care system, together with low-threshold support concepts, in order to increase psychosocial well-being. More research evaluating individual approaches to confronting the own end of life are needed to better understand this determinant of well-being and its mechanisms of action

Perceptions of and Attitudes Toward Death, Dying, Grief, and the Finitude of Life-A Representative Survey Among the General Public in Germany

Some end-of-life aspects have become a significant political and social issue such as elderly care and euthanasia. But hardly anything is known about how the general public in Germany thinks about death and dying more generally. Therefore, we conducted a representative online survey (N = 997) regarding 21 end-of-life aspects. Differences between subgroups were analyzed by conducting analyses of variance and Tukey honestly significance difference post hoc tests and by performing t tests. The findings revealed that the general public is open to engaging with topics of death, dying, and grief and that death education might even be promoted for children. Most participants appraised dealing with the finitude of life as part of a good life, but few have contemplated death and dying themselves so far. Attitudes and perceptions were related to age, subjective health, religious denomination, and gender. The survey provides useful implications for community palliative care, death education, and communication with dying people

Severely Affected by Parkinson Disease: The Patient's View and Implications for Palliative Care

Introduction: People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. Methods: Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated. Results: Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr (P .05), poorer health ( P .01), higher nursing care level (P 0.01), and having no children ( P .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%). Conclusions: To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages