The perspective of professional caregivers working in generalist palliative care on 'good dying': An integrative review.

In today's industrial societies, many people die receiving professional care. Although specialist palliative and hospice care have often been identified as ideal care approaches to promote good dying, more people die receiving generalist palliative care. This integrative review examines how professional caregivers providing generalist palliative care in hospitals, nursing or private homes define good dying. Furthermore, through comparative analysis of existing empirical studies, it explores conceptual aspects in researching good dying that better reflect the social complexity of this phenomenon. Three databases (Scopus, MEDLINE, and CINAHL) were searched for peer-reviewed studies published between January 2000 and April 2020. Studies were selected if they presented original empirical findings from qualitative or quantitative studies on the perspective of professional caregivers in generalist palliative care (nurses, physicians, surgeons, clergy, and other staff) on good dying or related concepts (e.g., good death, dignity in dying, or quality of life at the end of life). 42 studies were included in the review. They identified good dying as expected, accepted and prepared dying, as free from pain and suffering, as socially embedded, as being at peace with one's life and situation, as supported with individualised and holistic care, as based upon professional cooperation and communication, and as in a peaceful and private environment. The paper concludes that the perspective of professional caregivers in generalist palliative care shares many elements of good dying with societal and specialist palliative care discourses around good dying. Through comparing the different studies, the review found that studies that explicated who benefitted from ideals and practices of good dying, questioned the dichotomous categorisation of good/bad dying, or discussed the compatibility of elements of good dying, provided more nuanced perspectives on this topic. Thus, the review calls for a more systematic analysis of these aspects in research of good dying.

Developing dementia-friendly pharmacies in Austria: a health promotion approach.

The need for integrated, accessible and person-centred care for people with dementia to foster quality of life and facilitate life in the community has been voiced by health policy. Pharmacies have the potential to provide easily accessible information and support for people with dementia, caregivers and the public. The 'Dementia-friendly Pharmacy' programme aimed at re-orienting community pharmacy in Austria, focusing on stronger inclusion of professional counselling into core services. It followed principles of health promotion and person-centred care, aiming at empowering all actors involved, and at fostering quality of life. Methodologically, the programme was based on participatory health research, thus involving all relevant actors and consolidating their perspectives on issues related to dementia care. In the course of the programme, a workshop series covering topics relevant for dementia care in community pharmacy, as well as prototypes for small-scale projects were developed, and measures were taken for securing sustainability. Findings related to programme development and implementation encompass pharmacy staff's motivation to participate in the programme, counselling knowledge and skills development, experience with building community partnerships and cross-organizational development and sustainability. Furthermore, effectiveness of the programme has been established. These findings are discussed against the background of re-orienting pharmacies.

Challenges and strategies in communication with people with dementia and their informal caregivers in community pharmacies - a narrative approach.

BACKGROUND: People with dementia and their informal caregivers get in touch with the healthcare system predominantly via contacts with primary care providers. Among these, community pharmacists have been denominated as the health professionals most accessible to the public. Communication with and counselling people with dementia and their informal caregivers present particular challenges to pharmacists. AIM: This study aims to research the challenges faced and strategies used by community pharmacists who deal with people living with dementia and their informal caregivers. METHODS: Within the context of two workshops with 74 participants, 15 small groups were formed, each of which generated and discussed a small story. Fourteen of those narratives were reported, tape recorded and transcribed. In these 14 narratives, community pharmacists reflected on their experiences with people with dementia or their informal caregivers. The narratives were systematically analysed and interpreted. FINDINGS: Among the main challenges reported by the workshop participants are the difficulty of identifying a person with dementia; the question of what appropriate communication is; the only partially successful networking with doctors, nursing personnel and support institutions; unsuccessful counselling; and the tension between the economic situation and the care for people with dementia and their informal caregivers. In general, strategies for dealing with people with dementia are characterised by uncertainty whereas communication with informal caregivers is well rehearsed and effective. CONCLUSIONS: Community pharmacies require possibilities to retreat for counselling as well as the possibility for pharmacists to take time for people with dementia and their informal caregivers in everyday pharmacy life. Reflective spaces for narrations about difficult situations provide relief for staff in community pharmacies.

Palliative care culture in nursing homes: the relatives' perspective.

BACKGROUND: Nursing homes are confronted with a significant change in their client structure. Palliative care gains importance in caring for residents until the end of their life. Relatives play a crucial role in caring for older people in nursing homes, especially in palliative care. As the perspective of relatives on palliative care culture in nursing homes has not yet been studied extensively, research in this field still has an exploratory character. AIM: The aim of the paper is to highlight some of the most important insights into themes and issues that relatives of persons having died in a nursing home find essential, with a view to fostering a well-established palliative care culture. METHODS: Within a qualitative approach, four focus group interviews were conducted. FINDINGS: Findings indicate that good communication is a core element of a well-established palliative care culture. Direct contact with relatives, talking about death and dying and the opportunity to be involved in decision-making all support a good palliative care culture. The fact that residents have a diverse range of social backgrounds, for example, regarding ethnicity, gender and living with dementia, influences palliative care in nursing homes and has to be taken into account. CONCLUSIONS: To create a good palliative care culture, management has to support this approach, continuously develop appropriate structures and act in a competent way.

["Doing gender" in a nursing home for the elderly : Perspectives of staff and management]. / "Doing Gender" im Altenpflegeheim : Perspektiven von Mitarbeitenden und Führungskräften.

BACKGROUND: "Doing gender" plays an important role in nursing interactions in long-term care settings. AIM: The aim of this article is to focus on the experiences of staff and management in a long-term care setting on the social categorization of gender and to reflect and discuss these findings against already existing research. MATERIAL AND METHODS: Within a qualitative study, one to one interviews and group discussions with a total of 28 participants were conducted. RESULTS AND CONCLUSION: The results show how "doing gender" as a social practice effects interactions with residents, within the working team and in the context of management and hierarchy in the long-term care setting. In interactions with residents, gender-specific behavior can be observed. Within the working team gender-specific differences with respect to division of labor and working hours are reported. Concerning management and hierarchy it can be observed that male executives react more strongly in correspondence with the expectations of their gender role whereas female executives show more discrepancies between the expectations towards their position and gender role.

OA53†"dementia friendly pharmacies" a community based health promotion project.

BACKGROUND: Inspired by the Ottawa Charter for Health Promotion, which is a major point of reference also for the "Compassionate Communities", we would like to propose that communities consolidate various settings like schools, workplaces, and health care organisations like community pharmacies, all of which might be included in a compassionate communities approach. AIM: We aim at enabling community pharmacies to offer informal consulting and support for people with dementia and their informal caregivers. Furthermore we want to support pharmacies to reach out in the community through various activities. By this means the project seeks to contribute to de-stigmatising dementia. METHOD: The project is based on the approach "Participatory Health Research" (Hockley, Froggatt, Heimerl 2013; Wright et al . 2010). The core elements of the approach are participation, action and reflection. Approximately 40 staff (almost exclusively women) in 18 community pharmacies actively participates in the project, i.e. needs assessment, interactive workshops, practice projects and evaluation. People with dementia and their informal care givers are included in the needs assessment and in different steps of the programme. RESULTS: Community pharmacy staff raised several issues, closely related to communication, counselling and providing advice in a community pharmacy setting: They believe further development of professional practice to be important, since dementia care will become a more prominent issue for the community pharmacy. Moreover, a high frequency of contact with people living with dementia and their caregivers was reported by the majority of staff. Professional competencies related to dementia care are a key issue, and community pharmacy personnel viewed their practice with a critical eye: Communicating with disoriented persons poses some challenges, as does communicating with caregivers. CONCLUSION: In the still ongoing project the raised issues are being dealt with in practice projects that are performed by the pharmacies with the support of the project staff. Several projects reach out to the community through self-help groups, cinema performances, public presentations and discussions. Informal care givers have engaged in direct contact with the included pharmacies and become part of selected practice projects. People with dementia have been included in the needs assessment and the design of the project logo.

Ethics and gender issues in palliative care in nursing homes: an Austrian participatory research project.

BACKGROUND: The development of palliative care in nursing homes in German-speaking countries has gained in importance within the past 15-20 years. Ethical and gender issues are core aspects of a palliative care culture and should therefore be better understood. AIMS AND OBJECTIVES: The aim of this study was to highlight insights regarding ethical and gender issues, based on the experiences of professionals in nursing homes. DESIGN: A 2-year participatory action research study was performed in collaboration with three nursing homes in Austria. METHODS: The article focusses on 10 group discussions with interdisciplinary professional teams that were conducted to generate ethical narratives. Thematic and narrative analysis was undertaken both individually and within the interdisciplinary research team. Findings and interpretations were validated with practitioners and researchers. FINDINGS: A total of 36 narratives were collected and summarised within eight themes concerning the theoretical journey of a nursing home resident with relatives from entry into the house until death. The most burdensome ethical dilemmas are not the ones around death and dying but rather those relating to small-scale everyday work/life issues. Sharing experiences and feelings in ethical discussions provides relief. Emotions are important facilitators of insight into ethical dilemmas. Gender issues can be observed in care situations as well as in the organisational structure of nursing homes. CONCLUSIONS: Opportunities to share experiences and perspectives around ethical questions in interdisciplinary group discussions help professionals to better understand difficult issues and find appropriate ways of managing them. IMPLICATIONS FOR PRACTICE: There is a need for communication structures such as facilitated ethical discussions that enable nursing home staff to reflect their everyday decisions. Expression of emotions should be encouraged in ethical decision-making processes in nursing homes. Gender-sensitive reflection supports the development of palliative care as organisational culture.

Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings.

BACKGROUND: Caring for and caring about people with dementia require specific communication skills. Healthcare professionals and family caregivers usually receive little training to enable them to meet the communicative needs of people with dementia. This review identifies existent interventions to enhance communication in dementia care in various care settings. METHODS: We searched MEDLINE, AMED, EMBASE, PsychINFO, CINAHL, The Cochrane Library, Gerolit, and Web of Science for scientific articles reporting interventions in both English and German. An intervention was defined as communication skills training by means of face-to-face interaction with the aim of improving basic communicative skills. Both professional and family caregivers were included. The effectiveness of such training was analyzed. Different types of training were defined. Didactic methods, training content, and additional organizational features were qualitatively examined. RESULTS: This review included 12 trials totaling 831 persons with dementia, 519 professional caregivers, and 162 family caregivers. Most studies were carried out in the USA, the UK, and Germany. Eight studies took place in nursing homes; four studies were located in a home-care setting. No studies could be found in an acute-care setting. We provide a list of basic communicative principles for good communication in dementia care. Didactic methods included lectures, hands-on training, group discussions, and role-play. CONCLUSION: This review shows that communication skills training in dementia care significantly improves the quality of life and wellbeing of people with dementia and increases positive interactions in various care settings. Communication skills training shows significant impact on professional and family caregivers' communication skills, competencies, and knowledge. Additional organizational features improve the sustainability of communication interventions.