[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.

Nonkin Carers' Roles and Contributions to the Support of Older People Living Alone: An Analysis of Qualitative Data.

OBJECTIVES: In the Global North, the number of older people living alone who have little or no support from family members is increasing. However, little is known about older people living alone who have basic needs for support but do not have kin living nearby or a sustainable relationship to a relative they can rely on. Thus, this paper focuses on the role of nonkin carers and their contribution to the support arrangements of older people living alone. METHODS: We conducted semistructured interviews with 32 older people living alone aged between 67 and 99 (Ø 84.2 years) in Austria, 23 women, and 9 men. The interviews were analyzed by applying a coding strategy based on grounded theory. In addition, sociograms were created to illustrate relevant relations in each support arrangement. RESULTS: We identified and characterized 3 groups of nonkins involved in the support arrangements of older people living alone based on the origins of the relationships: (1) friends, (2) neighbors, and (3) acquaintances like members of various communities. The arrangements were classified according to the amount and quality of involvement of nonkin carers, namely manifold, scattered, and little nonkin involvement. DISCUSSION: Our study highlights the diversity of nonkin support in the support arrangements of older people living alone. This heterogeneity should be considered by policy-makers when promoting informal care and designing policy measures.

[Older people living alone: the importance of informal non-kin care : Scoping review]. / Alleinlebende ältere Menschen: Stellenwert der informellen außerfamiliären Hilfe : Literaturübersicht.

BACKGROUND: The number of older people living alone is constantly increasing. This group faces special challenges regarding remaining at home when their care needs increase, especially in later life. When no family is available, friends and neighbors, so called non-kin carers, are important sources of support. OBJECTIVE: A literature review was conducted to evaluate existing research on the relevance of non-kin support for older people living alone, from initial limitations to the end of their lives, particularly when they wished to remain at home. METHOD: The literature search followed the criteria of a scoping review and was conducted in relevant databases and manually. A total of 22 studies were included in the analysis. RESULTS: Older people living alone are often embedded in complex support networks. Living alone at an advanced age creates tensions between the desire for independence and the need for help. Non-kin carers primarily provide instrumental, emotional, and informational support. Challenges arise due to difficult interpersonal dynamics and the overburdening of non-kin carers, especially when those they support are at the end of their lives. CONCLUSION: It is important to understand care networks as a complex interplay of different actors. Future research should focus on the specific burdens on non-kin carers as well as on the dynamics of relationships in these care networks.

Support towards the end of life and beyond: Non-kin care commitment for older people living alone in Austria.

Non-kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non-kin carers (n = 15) and additional in-depth interviews (n = 8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non-kin carers had to negotiate personal boundaries continuously over the end-of-life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person's death, non-kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non-kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non-kin carers providing end-of-life care for an older person living alone.

Under Reconstruction: The Impact of COVID-19 Policies on the Lives and Support Networks of Older People Living Alone.

The Austrian government introduced in spring 2020 COVID-19 containment policies that had various impacts on older people living alone (OPLA) and their care arrangements. Seven qualitative telephone interviews with OPLA were conducted to explore how they were affected by these policies. The findings show that the management of everyday life and support was challenging for OPLA even though they did not perceive the pandemic as a threat. To better address the needs of OPLA, it would be important to actively negotiate single measures in the area of conflict between protection, safety and assurance of autonomy.

Eine Frage des Vertrauens - Grounded Theory-Studie zum Alltagserleben HIV-positiver und an AIDS erkrankter Menschen.

A matter of trust - A grounded theory study on the everyday experience of people living with HIV / AIDS Abstract. Background: Provided that the antiretroviral therapy is taken correctly, HIV / AIDS has become a chronic disease allowing for a nearly normal daily life, which is still, however, characterized by specific challenges. Aim: The aim of this study was to explore how HIV / AIDS patients experience and manage their everyday life, against the backdrop of chronification. Method: A qualitative grounded theory approach according to Corbin and Strauss; problem-centered interviews with 18 participants suffering from HIV / AIDS; analysis of data was performed by applying coding strategies and supported by MAXQDA. Results: The present study shows that "trust" is of crucial significance to HIV / AIDS patients in their private, occupational and healthcare environments, where discrimination, stigma and exclusion still occur. The revelation of the infection status represents a particular challenge. We identified three key patterns of trust: evolved trust, controlled trust and distrust / loss of trust. Depending on these patterns, patients approach their condition in strikingly different ways, with apparent consequences on their quality of life. Conclusion: The here established trust patterns provide a theoretical foundation that may serve as a hub for improving support and care of people suffering from HIV / AIDS. Moreover, reducing the social stigma and discrimination faced by these individuals, primarily in the healthcare system, is paramount for the future handling of the disease.

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.

Older people living alone (OPLA) - non-kin-carers' support towards the end of life: qualitative longitudinal study protocol.

BACKGROUND: A growing number of older people, mainly women, live in single households. They represent a vulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end of life. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay at home even at the end of life. This paper aims to introduce the research protocol. METHODS: We plan to apply a qualitative longitudinal study to better understand how older people living alone and their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We will conduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 complete data sets and up to 200 personal interviews were planned. These will be complemented by regular telephone contacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructing case trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer. DISCUSSION: This study protocol aims to guide research in a field that is difficult to approach, with regard to its topic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will be enhanced, which is of major relevance for future care planning. With investment in additional reflexivity and communication procedures innovative results and robust knowledge are expected outcomes.

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.

[Living and dying with frailty : Qualitative interviews with elderly people in the domestic environment]. / Leben und Sterben mit Gebrechlichkeit : Qualitative Interviews mit älteren Menschen im häuslichen Umfeld.

BACKGROUND: Frail older people are becoming an increasingly more important target group in healthcare provision. Little is known about patients' views on frailty and its various impacts, especially towards the end of life. This study was carried out to analyze the needs of frail elderly people at the end of life. METHOD: A qualitative, longitudinal case study design was applied and included 31 frail older patients (≥ 70 year) with a Canadian study of health and aging (CSHA) clinical frailty scale (CFS) grade 6/7 from urban and rural areas within the region of Lower Saxony. The analysis was based on guided interviews and followed the principles of grounded theory. RESULTS: From the patients' perspective frailty is perceived as a process of increasing complexity of health problems, increased vulnerability and reduced ability to perform tasks. Frailty is experienced as various deficits including the physical, psychological, social and existential dimensions. Living and dying in a familiar environment and maintaining autonomy was identified as a core category. Key determinants were access to and quality of healthcare services as well as various individual and social resources. CONCLUSION: A palliative biopsychosocial care approach should be established early in the process of frailty, including advance care planning in order to meet the patients' needs of staying in a familiar environment. General practitioners as well as home care nursing personnel have to collaborate in order to balance issues of autonomy with increased care needs and the support of informal carers as key partners towards the end of life.

From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone.

BACKGROUND: A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people's desire for a home death, but very little is known about the challenges they face during their involvement. AIM: Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care. DESIGN: Exploratory qualitative design; perspectives of non-kin-carers were collected through personal in-depth interviews ( n = 15) retrospectively. SETTING: Home care, urban and rural areas in Austria Findings: A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decision-making and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kin-carers' steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams. CONCLUSION: Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved.

[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.

End of life care for frail older patients in family practice (ELFOP)--protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services.

BACKGROUND: Frail elderly people represent a major patient group in family practice. Little is known about the patients' needs, and how their needs evolve over time with increasing frailty towards the end of life. This study will address end-of-life care needs, service utilisation, and experiences of frail elderly patients and their informal caregivers, with regard to family practice. This paper aims to introduce the research protocol. METHODS/DESIGN: The study uses a multiple perspective approach qualitative design. The first study part consists of serial six-monthly in-depth interviews with 30 community-dwelling elderly patients (≥70 years) with moderate to severe frailty and their key informal caregivers, over a period of 18 months. Additionally, semi-structured interviews with the patients' family physician will be conducted. The serial interviews will be analysed with grounded theory and narrative approaches. Special attention will be paid to the comparison of distinct views of the patients', informal caregivers', and family physicians' as well as on chronological aspects. In the second study part, five focus groups with experts in family medicine, geriatrics, palliative medicine, and nursing will be conducted. Finally, the implications for family practice and health care policy will be discussed in an expert workshop. DISCUSSION: To our knowledge, this is the first prospective, longitudinal qualitative study on the needs of elderly patients with advanced frailty towards the end of life in German family practice, which integrates the perspectives of patients, informal caregivers, family physicians and other health professionals. The study will contribute to the understanding of the clinical, psychosocial and information needs of patients and their caregivers, and of respective changes of experiences and needs along the illness/frailty trajectory including the last phase of life. It will provide an empirical basis for improving patient-centred care for this increasingly relevant target group.

Older patients' attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British, Dutch and Belgian patients.

BACKGROUND: Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients' communication with physicians. This study examines older patients' attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries. METHODS: A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach. RESULTS: Themes from 30 interviews (Male n = 20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians' availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment. CONCLUSIONS: A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the 'informed' and the 'shared' patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients' experiences.

Interviews on end-of-life care with older people: reflections on six european studies.

Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European countries: Belgium, Germany, the Netherlands, and the United Kingdom. The reflection process was informed by four full-day meetings between the authors and referral to sources including the study interview guides, summary "pen portraits" about key issues encountered in the interviews, and key sections of the interview transcripts. We identified as major challenges accessing people, the introduction of end-of-life issues in an interview, managing emotions, the presence of companions, and reciprocity. Formal ethical review committees rarely take into account these complex issues. We concluded that is it necessary to maintain an ongoing reflexive stance to enhance qualitative research practice in the intersecting fields of aging and end-of-life studies.

[Recognizing and defining dying. Analysis of end-of-life coverage in German nursing textbooks]. / Was ist Sterben und wann beginnt es? Eine Analyse deutschsprachiger Lehrbücher der Pflege.

Text books play an important role in basic education in nursing. This study aimed at capturing the extent and content of end-of-life issues in nursing text books in German language. For that reason, a quantitative and a qualitative analysis of relevant content in a comprehensive sample of nursing text books available (n = 65) were conducted. Whereas 29.2 % of the books do not cover the issue at all, 44.5 % dedicate a separate chapter to the issue of dying, which accounts for 1.34 % of all pages on average. Of all specialties, both surgery and internal medicine feature the lowest, and paediatrics and oncology the highest share of coverage. 41.53 % of all text books studied contain a definition of the term dying which is based on a great variety of approaches. 23 books list criteria that define the recognition of dying, 21 of which draw attention to symptoms of impending death. 84 % of the books refer to the work of Elisabeth Kübler-Ross. Overall, the amount of coverage of the issue of dying in nursing text books can be considered marginal by international comparison. What is problematic is the conceptual reduction to physiological signs of impending death and the lack of references to existing theoretical work. Integration of knowledge from the area of palliative care in all specialties is strongly needed. Additionally, there is a need for a stronger conceptual debate in order to avoid problems in communication about death and dying in nursing education and practice.

Dignity and the challenge of dying in nursing homes: the residents' view.

BACKGROUND: human dignity is discussed in almost all public debates on the care of the dying, as well as in international policies for health and social care of older people. Because nursing homes are gaining importance as places where residents live out their lives in modern western societies and since there is evidence that end-of-life care in nursing homes lacks quality, there is a growing discussion on introducing improved end-of-life care in these institutions. In order to accomplish this, the view of those who are most affected is of utmost importance. OBJECTIVE: to explore the meaning of dignity with regard to end-of-life issues from the perspective of older nursing home residents in western Germany. METHODS: this qualitative study is based on the Grounded Theory Approach, and the design included three steps of data generation; narrative interviews with residents of nursing homes constitute the main data pool (n = 20) of the results presented in this paper. Theoretical sampling was aimed at maximising the variety of organisational as well as residents' characteristics. Analysis of the transcripts was supported by Atlas/ti program and followed several different coding procedures and aimed at generating a concept of dignity. RESULTS: dignity was differentiated into intrapersonal dignity and relational dignity, socially constructed by the act of recognition. Social relations and encounters are a prerequisite for relational dignity, which underlines the vulnerability of nursing home residents' who increasingly lack social networks. A broad spectrum of attitudes and behaviour, which aimed at recognising dignity, was bundled under the category 'not being a burden'. In this light, dignity was challenged most by the threat of illness and having care needs. This was fostered by the perception of insufficient care in the nursing homes. In the light of this concept, death with dignity meant 'death at the right time', though the residents in the sample did not want to comment on the time of death, other than aspects like (i) being active to the very last, (ii) respecting one's will and being allowed to die, (iii) not being in pain, (iv) being amongst persons close to one (valediction and showing respect). CONCLUSION: the study emphasizes the high vulnerability of nursing home residents with regard to dignity. They place their dignity under the constraints of the need for help and care into question. This appears alarming, if one does not manage to, with the help of different ethics, obtain a new perspective on these phases of life. It is evident that the understanding of dignity is not solely individualistic and personal, but rather has a close relationship to social ideas of value, which ultimately influence the basic requirements of institutions in which 'frail old people' live.