[Implementation of the German CSNAT-I to support family caregivers in palliative home care: Evaluation results]. / Implementierung des KOMMA-Ansatzes zur Unterstützung von Angehörigen in der häuslichen Palliativversorgung.

Implementation of the German CSNAT-I to support family caregivers in palliative home care: Evaluation results Abstract. Background: Supporting family carers in palliative home care mostly lacks a systematic approach. In a three-year model project, the Carer Support Needs Assessment Tool Intervention (CSNAT-I), an evidence-based person-centred approach for family caregiver support, was implemented and evaluated in three project regions in North Rhine-Westphalia. Aim: To present the implementation process and factors that impacted on it. Methods: The German CSNAT-I was adapted and subsequently implemented by six hospice services and specialised home palliative care teams with the assistance of champions. The evaluation was based on Normalization Process Theory (NPT) using a mixed methods evaluation design. Results: The German CSNAT-I was used across service boundaries, but routine implementation could not be fully achieved within the relatively short implementation timeframe. Staff members were convinced of the approach's significance, and feedback from family caregivers was generally positive or non-specific. The practice of caregiver support evolved, and the importance of family caregivers received increased attention. Barriers emerged in person-centred communication with family caregivers and within organizational routines. Conclusion: The implementation showed that the person-centred intervention has the potential to enhance caregiver support in the German palliative home care setting. Implementing the CSNAT-I requires a cultural shift within the services.

[Support needs of caregivers of people with dementia: An integrative literature review]. / Unterstützungsbedürfnisse pflegender Angehöriger von Menschen mit Demenz.

Support needs of caregivers of people with dementia: An integrative literature review Abstract: Background: Family caregivers are of great importance in the home care for people with dementia. The care and related stress can have a negative impact on their health. The CSNAT (German: KOMMA) is an approach to support family caregivers in palliative home care that could be used for this group of people. Aim: The aim was to identify support needs for caregivers of people with dementia in the literature and compare these with those that formed the basis for the development of the KOMMA approach. Method: We performed an integrative review. Literature research was conducted in February and March 2021 in the MEDLINE, CINAHL and PsycInfo databases. Relevant studies were identified and assessed using inclusion and exclusion criteria. Using MAXQDA, the data were assigned to categories with a content analytic procedure. Results: 23 studies were included that had been published with peer review procedure. Compared to the KOMMA approach, family caregivers show divergent support needs in the areas of (in)formal assistance, access to knowledge, managing physical and mental health conditions, maintaining the relationship, (temporarily) relinquishing the caregiving role and social integration. Conclusion: The KOMMA tool for identifying support needs cannot be directly adopted for this group of caregivers in its present form. However, given the richness of identified support needs, the development of a person-centered and needs-oriented assessment seems important.

[COVID-19 protective measures in nursing homes: Between autonomy and care - Results of an interview study]. / Covid-19 Schutzmaßnahmen in Alten- und Pflegeheimen: zwischen Autonomie und Fürsorge ­ Ergebnisse einer Interviewstudie.

Definition of the problem: This interview study investigated ethical issues in long-term care facilities from the perspective of caregivers during the coronavirus disease (COVID-19) pandemic. Due to the explorative as well as descriptive methodological approach, interview data are available and can be assigned to four central topics, which reveal a complex and sometimes conflictual reality of work and life in long-term care during the pandemic. On the one hand, the protective measures taken by the state and the institutions, as well as the resulting restrictions on the personal freedom of the residents are critically reflected and the degree of self-determination of the residents of nursing homes in the pandemic is questioned. On the other hand - given the pandemic-related measures - nursing activities in long-term care facilities as a place of work and life are described as challenging, especially regarding the changed nursing processes and quality of care, as well as due to the changed quality of relationships with the residents. Arguments: These four topics can basically be assigned to the ethical principles of autonomy and care and present a relevant concretization of the principle-oriented ethical challenges in long-term care during the COVID-19 pandemic. In the synopsis and interpretation of the results, it becomes apparent that the interviewed caregivers closely link the observance and implementation of the autonomy principle in everyday nursing care with the principle of care and the resulting well-being of the residents. Conclusions: Our results clearly show that the paradigm shift in long-term care, which has been developed over the last few decades, was (temporarily massively) weakened by the COVID-19 pandemic. In addition, the reported moral uncertainties and conflicts make it clear that caregivers need support regarding the ethical reflection of their nursing actions and that a sustainable integration of ethics counselling in long-term care facilities may be a possible approach to a solution.

The social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer: A narrative review.

OBJECTIVE: Having a child with cancer is a burdensome experience for parents. Nurses need to better understand beliefs, hopes, and values of parents to holistically support them, which may have an impact on grief and depression. Thus, the aim of this paper was to highlight the social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer. METHOD: A narrative literature review was conducted by systematically searching databases (CINAHL Complete, Academic Search Elite, MEDLINE) for relevant literature. The contents of included studies were critically appraised regarding their methodological quality. RESULTS: Eleven studies were included. In terms of the social dimension, three categories emerged that are important for parents: Being a Parent, Being in Relationship with the Child, and Being in Relationship with Health Professionals. Parents tried to maintain normality and joy for their child, but also kept control over the situation. They wanted to protect their child from suffering but also felt the need to talk to them about dying. Parents had ambivalent experiences with helpful but also burdensome staff. The spiritual dimension comprised two main categories, Hope and Faith and a Unique Bond. Hope was found to be an important source of strength, while Faith was only mentioned by some parents. For parents the emotional connection with their child constituted a source of meaning as well as a foundation, on which they based their decisions on. SIGNIFICANCE OF RESULTS: A therapeutic relationship and a supportive environment can be established by healthcare professionals by noticing, encouraging the unique bond between parents and their children, as well as by reflecting and addressing the parents' challenging situation.

[Make nursing practice visible through nursing science in times of COVID-19]. / Pflegepraxis durch Pflegewissenschaft in Zeiten von COVID-19 sichtbar machen.

Due to coronavirus disease 2019 (COVID-19) nursing practice is facing enormous challenges. Nevertheless, nursing science was hardly actively represented as a mouthpiece for the practice in the public discussions on the COVID-19 pandemic. Therefore, the question arises which projects with a focus on nursing and COVID-19 have been carried out at Austrian universities. Overall, six projects were identified using the snowball method. Of the studies one showed that an increased wearing time of masks is associated with an increased stress level for nursing personnel. An additional study result showed that almost 50% of lay people used masks incorrectly. Individual experiences, interventions undertaken and solution approaches from the perspective of the nursing staff with respect to ethical challenges in nursing homes were collected in a further project. This and other projects show that nursing science, with its knowledge and as a voice for nursing practice, has taken the initiative and contributes to the COVID-19 discourse. Additionally, the findings of the projects can be used as a basis for making future political decisions.

Development of a German version of the Carer Support Needs Assessment Tool (CSNAT): The process of translation and cultural adaptation.

OBJECTIVE: The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. METHOD: A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. RESULTS: The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called "KOMMA" was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers' needs at the cost of the patients. SIGNIFICANCE OF RESULTS: A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.

Qualitative longitudinal studies in the context of Palliative Care - methodological, ethical and psychosocial aspects / Qualitative Längsschnittstudien im Forschungsfeld Palliative Care ­ Methodische, ethische und psychosoziale Aspekte

Background: Qualitative longitudinal studies (QLS) are beneficial for research in Palliative Care though there is little methodological discourse of the approach in nursing science. Aim of this paper is to highlight methodological, ethical, and psychosocial aspects, raised by using a qualitative longitudinal design in Palliative Care. Method: Based on a PhD study with family carers in palliative home care, experiences with the development and realization of a QLS were reflected and analysed. A literature analysis linked the experiences to the current state of research. Results: Methodological challenges were those of time and timing of interviews, which leaded finally to flexible interview intervals with the carers. Flexibility and building relationships with the carers minimized attrition and increased data quality. This approach and further ethical implications leaded to a high degree of ethical responsibility, as well as emotional challenges for the researcher. Conclusion: The results illustrate and reflect several implications of QLS in the research field of Palliative Care. They highlight framework conditions needed to develop research of high quality in this context.

[Struggling for normal in an instable situation - informal caregivers self-management in palliative home care. A meta-synthesis]. / Um Normalität in einer instabilen Situation ringen. Selbstmanagementstrategien von Familien in der Palliative Care zu Hause - eine Metasynthese.

BACKGROUND: Family caregivers play a key role in palliative home care for persons with advanced cancer. Although research has shown numerous burdens and strains of family caregiving, there is a lack of family-oriented support strategies in palliative home care. Little is known about family caregivers' self-management in this context so far. Qualitative research provides insight into families' perspectives of the transition to and management of palliative care at home and can be used as a starting point. AIM: The aim of the study was to increase knowledge of family caregivers' self-management in palliative home care by synthesizing evidence from qualitative research. METHOD: Based on a systematic review of literature a meta-synthesis was conducted following the approach of Noblit and Hare (1988). A total of 13 qualitative studies from six countries, published from 2002 onward, formed the basis for an interpretative synthesis. RESULTS: Caring for a person with advanced cancer at the end of life at home is characterized by an instable transition process in which families are 'struggling for normal'. Six different family self-management strategies to deal with this were identified: acknowledging the transition, restructuring everyday life, maintaining balance in family relationships, taking responsibility for care, using social support, and acquiring caring-skills. CONCLUSION: Self-management strategies may provide a key for supporting family caregivers in palliative home care by focusing on resources and problem solving skills of families.