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1.
Gesundheitswesen ; 2024 May 06.
Artículo en Alemán | MEDLINE | ID: mdl-38365218

RESUMEN

INTRODUCTION: Since 2015, the Federal Joint Committee (G-BA)'s Innovation Fund has been supporting projects in health services research and new health service models ("Neue Versorgungsformen", NVF). By the end of 2022, 211 projects in the NVF category had been funded. A key objective is the transfer of successful projects into standard care. This article analyzes previous projects regarding their incorporation into routine care based on transfer recommendations of the Innovation Fund Committee ("Innovationsausschuss" IA). METHOD: Descriptive analysis of all projects completed by August 1, 2023 with transfer recommendations in the "NVF" funding stream. Presentation by topic, project duration, time until IA transfer decision, categorization, and number of institutions and organizations (recipients) addressed per project, their feedback published on the G-BA website, response rates per recipient group, and a content classification and interpretation of exemplary feedback. Recommendations based on the results and their discussion in an expert workshop. RESULTS: Out of 57 NVF projects, 17 had a transfer recommendation. A total of 57 feedback responses were received from a total of 431 recipients addressed by the IA across these projects. Response rates varied significantly. One-third of inquiries to the G-BA and its member organizations received a response (31%), while only every fifth inquiry to federal states (18%) and professional societies (18%) got a response. Less than one in ten inquiries to the Federal Ministry of Health (8%), administrative bodies (6%), and the German Medical Association (0%) received a response. Project-specific feedback within a recipient group was often contradictory or limited to regional scope. DISCUSSION AND CONCLUSION: The transfer process reveals significant structural and procedural obstacles regarding the incorporation of projects evaluated as successful into routine health care. To ensure that funding from the innovation fund is most effectively used, there needs to be a realistic chance of successful transfer of positive project outcomes into routine care. The DNVF recommends stronger involvement of rule-competent institutions, mandatory publication of responses, structured moderation of the transfer process, expanding types of selective contracts, financing of implementation phases and of studies drawing on results across successful NVF projects.

2.
PLoS One ; 19(1): e0294106, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38236932

RESUMEN

Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research.


Asunto(s)
Afecciones Crónicas Múltiples , Humanos , Femenino , Persona de Mediana Edad , Masculino , Europa (Continente) , Cuidadores/psicología , Atención al Paciente , Estudios Longitudinales , Internet
3.
Gesundheitswesen ; 85(6): 495-504, 2023 Jun.
Artículo en Alemán | MEDLINE | ID: mdl-37315565

RESUMEN

The COVID-19 pandemic has a massive impact on social life, the healthcare system, and also on health services research. However, the effects of the pandemic on research processes, methods, and the personal situation of researchers has not been investigated so far. Guided by the question of how research processes and methods are adapted to the challenges posed by COVID-19 and how researchers perceive the impact of the pandemic on their personal situation, an online survey of health services researchers was conducted from June to July 2021. The results showed that a large proportion of research projects have had delays due to recruitment and/or data collection issues. Two-thirds of the respondents who had already collected data since the beginning of the pandemic (March 2020) were unable to collect data in the originally planned form and relied primarily on digital data collection methods. The analysis of the open-ended survey responses showed that the pandemic had a massive impact on all phases of the research process: key challenges included difficult field access, problems in achieving planned sample sizes, and concerns about data quality. Regarding their personal situation, researchers perceived the reduction of personal contacts, and the resulting lack of visibility as negative, while at the same time they benefited from the easy digital contact possibilities. Overall, the study provides an initial assessment of how the COVID-19 pandemic affected health services research and researchers. It shows that after the initial "shock" of the first lockdown in March 2020, pragmatic and often innovative ways were found to carry out projects under the pandemic conditions. However, the increased use of digital communication forms and data collection methods brings numerous challenges, but also methodological impulses.


Asunto(s)
COVID-19 , Pandemias , Humanos , Alemania/epidemiología , COVID-19/epidemiología , Control de Enfermedades Transmisibles , Investigación sobre Servicios de Salud , Encuestas y Cuestionarios
4.
Gesundheitswesen ; 85(8-09): 741-749, 2023 Aug.
Artículo en Alemán | MEDLINE | ID: mdl-37253371

RESUMEN

With this discussion paper, the subgroup Mixed Methods of the working group Qualitative Research Methods in the non-profit organization German Network Health Services Research (DNVF) is taking up the topic of three previous discussion papers on the significance and potentials of qualitative research methods in health services research. Mixed methods are being increasingly used and demanded in health services research. However, there are also areas of conflict in the planning and implementation of mixed methods studies, and these are addressed in this paper from the perspective of qualitative research. Special attention is given to the aspect of integration as the fundamental signature of mixed methods research. With this discussion paper, our aim was to stimulate critical as well as constructive exchange of ideas on what constitutes high-quality health services research characterised by a diversity of methods and the framework conditions under which this can succeed.


Asunto(s)
Investigación sobre Servicios de Salud , Proyectos de Investigación , Humanos , Alemania , Investigadores , Investigación Cualitativa
5.
BMC Geriatr ; 22(1): 908, 2022 11 28.
Artículo en Inglés | MEDLINE | ID: mdl-36437442

RESUMEN

BACKGROUND: Most people with dementia live at home and are supported by informal carers. During the care trajectory, the creation of a stable care situation is a guiding principle of informal carers, who often manage complex care arrangements. A recently developed theory - 'Stability of home-based care arrangements for people living with dementia' (SoCA-Dem) - conceptualises how such care arrangements develop over time, and it highlights the relevance of the dyadic relationship, carer role, and resources with regard to the continuation of home-based care throughout the course of dementia. To further explore these three concepts, and to provide feedback for a further refinement of SoCA-Dem theory, this study aims to gain a deeper understanding of (1) how informal carers perceive their dyadic relationship, their carer role, and the resources of the care arrangement, and (2) how these concepts are interrelated. METHODS: This study was a secondary data analysis of n = 11 problem-centred interviews. Data were interpreted by a thematic qualitative text analysis. RESULTS: The findings distinguished subthemes within the concepts and uncovered their interrelations. The kinship relation, living situation and character of the dyadic relationship shaped informal carers' self-conception of the carer role. This influenced the integration of resources into the care arrangement. Conversely, the quantity and quality of informal and formal support resulted in a feeling of relief or overload in the carer role, that shaped the informal carers' way of living their dyadic relationship. The respective forming of the concepts had a significant impact with regard to the perceived stability or instability of the care situation in the examined care arrangements. CONCLUSIONS: This study provided valuable evidence for future research alignment and targeted refinement of the SoCA-Dem theory. Scholars should further explore the specifics of spousal versus parent-child-dyads to better understand the dyads' diverse strategies in the creation of stable home-based care arrangements. Furthermore, future research should focus on the complex dynamics of dyads, family networks, and service providers, and all actors' perspectives should be integrated in SoCA-Dem theory. Based on this growing knowledge base, innovative care interventions and structures should be developed to support people with dementia and their informal carers in better living and caring in the place of their choice.


Asunto(s)
Demencia , Servicios de Atención de Salud a Domicilio , Humanos , Cuidadores , Demencia/terapia
6.
Ethik Med ; 34(4): 573-590, 2022.
Artículo en Alemán | MEDLINE | ID: mdl-35854962

RESUMEN

Problem: An estimated 100,000-500,000 migrant care workers provide live-in care in German households, many of them caring for older people with dementia. Social research has identified a wide range of structural social problems associated with live-in care. However, a systematic ethical analysis and discussion is still missing. Arguments: This article explores the moral conflicts that arise in the microsetting of live-in arrangements for people with dementia. For this purpose, we conduct an ethical analysis of the expectations of relatives towards live-in care for people with dementia based on a qualitative content analysis of 182 contributions from three German-language online forums. These expectations address live-ins as service providers, professional nurses, moral agents, and family members. Conclusion: The diverse and often disappointed expectations of relatives are an expression of problematic and partly contradictory claims regarding live-in care for people with dementia. An ethical analysis of their legitimacy and coherence can help to improve the individual arrangement, the institutional organisation, and the moral framing and legal regulation of live-in care.

7.
Z Gerontol Geriatr ; 54(4): 336-342, 2021 Jul.
Artículo en Alemán | MEDLINE | ID: mdl-33877442

RESUMEN

BACKGROUND: As most older people in Germany wish to remain in their homes even in the case of increasing need for support, new forms of care are emerging in many locations. The aim of these new forms of care is to promote the stability of home-based care arrangements, which is also the aim of the so-called overall care concept of the municipal nursing home provider in Krefeld. The idea is that users of this concept are able to obtain a cross-sectoral broad spectrum of services which are tailored to their care needs. OBJECTIVE: This article presents to what extent users (people in need of help and/or care and their family carers) experience the contribution of the overall care concept over time as stabilizing with respect to the home-based care arrangement. MATERIAL AND METHODS: For this purpose, 24 interviews with 10 people in need of care and/or their family carers were analyzed by means of qualitative content and by cross-case longitudinal analyses. RESULTS: Some users experienced the contribution of the overall care concept as stabilizing, some experienced it ambivalently and occasionally users experienced a negative development trend. CONCLUSION: Concepts can have a stabilizing effect if they continuously correspond to the individual ideas and needs of the person in need of care and family carer(s). In order to do so, communicative negotiation processes between the provider and the care dyads could be a promising approach.


Asunto(s)
Demencia , Servicios de Atención de Salud a Domicilio , Anciano , Cuidadores , Alemania , Humanos , Casas de Salud
8.
BMJ Open ; 11(4): e042515, 2021 04 14.
Artículo en Inglés | MEDLINE | ID: mdl-33853798

RESUMEN

BACKGROUND: Most people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability? METHODS: Within the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis. RESULTS: 99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of change and balancing over time; (2) the characteristics of the care arrangement, including needs, the carer role, the dyadic relationship and resources; and (3) the context, which is determined by society and culture and the respective healthcare system. The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer. DISCUSSION: This middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice. OTHER: This meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).


Asunto(s)
Demencia , Servicios de Atención de Salud a Domicilio , Anciano , Cuidadores , Atención a la Salud , Demencia/terapia , Humanos , Vida Independiente
9.
BMJ Open ; 8(7): e021156, 2018 07 28.
Artículo en Inglés | MEDLINE | ID: mdl-30056381

RESUMEN

INTRODUCTION: Worldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge. METHODS AND ANALYSIS: To theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes. DISSEMINATION: The findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences. PROSPERO REGISTRATION NUMBER: CRD42016041727.


Asunto(s)
Atención a la Salud/organización & administración , Demencia/enfermería , Servicios de Atención de Salud a Domicilio/organización & administración , Proyectos de Investigación , Humanos , Metaanálisis como Asunto , Revisiones Sistemáticas como Asunto
10.
Z Gerontol Geriatr ; 50(3): 210-218, 2017 Apr.
Artículo en Alemán | MEDLINE | ID: mdl-26695067

RESUMEN

BACKGROUND: The majority of people with dementia in Germany live at home. These informal care arrangements, which are mostly coordinated by informal carers, are the backbone of home-based dementia care. Creating and maintaining stability is an underlying theme in informal care; however, a definition of the complex phenomenon of 'stability' in this context is still lacking. AIM: The aim was to develop a working definition of stability of home-based care arrangements for people with dementia, which can be applied in current and future research projects at the German Center for Neurodegenerative Diseases in Witten (DZNE Witten) and others. MATERIAL AND METHODS: Ensuing from prior research a preliminary version of the definition was formulated. This definition was discussed in a focus group of scientific experts with expertise in dementia research and care (n = 8). After data analysis using content analysis, the definition was revised during a scientific colloquium (n = 18) and a consensus was finally reached. RESULTS: There were four major themes which were considered by the experts as being relevant for the definition of stability: (1) creating and maintaining stability as a continuous adaptation process, (2) a qualitative component of stability, (3) persons with dementia and informal carers as pivotal players and (4) transitions to residential care. CONCLUSION: The working definition introduced in this article reflects the authors' understanding of the phenomenon of stability of home-based care arrangements for people with dementia. In times of increasing need for evidence-based interventions it is necessary to develop elaborated definitions of complex phenomena in order to be able to systematically evaluate the efficacy of interventions on the basis of a common understanding.


Asunto(s)
Cuidadores/clasificación , Atención a la Salud/clasificación , Demencia/diagnóstico , Demencia/enfermería , Servicios de Salud para Ancianos/clasificación , Servicios de Atención de Salud a Domicilio/clasificación , Terminología como Asunto , Anciano , Anciano de 80 o más Años , Demencia/psicología , Femenino , Grupos Focales , Evaluación Geriátrica/métodos , Alemania , Humanos , Masculino
11.
Dementia (London) ; 16(5): 576-590, 2017 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-26464430

RESUMEN

Low-threshold support services are provided within the basket of services of German long-term care insurance as a part of respite care to support family carers and people with dementia. This study investigates various stakeholders' (providers, coordinators, volunteers, family carers and people with dementia) perspectives on low-threshold support service regarding its organisation and conceptualisation as well as how stakeholders and users value low-threshold support service using a qualitative approach. Twelve guided interviews and group discussions were conducted with 31 participants. Organisation and conceptualisation are characterised by the lowness of the service thresholds, which is perceived to be quick and simple forms of support with no user requirements. Multiple barriers such as the challenging behaviour of people with dementia and their initial refusal as well as their holding low-threshold support service in low esteem can hinder the utilisation of these services. Low-threshold support service within the scope of the long-term care insurance law can be separated into two types: low-cost (non-professional) services and high-cost services with comprehensive training for 'employed' volunteers (professional). Both types are constantly developing within the landscape of the German long-term care system, and low-threshold support service appears to be adapted to diverse needs. Therefore, it is important to avoid replacing non-professional services with professional services.


Asunto(s)
Servicios de Salud Comunitaria , Demencia/terapia , Cuidados Intermitentes , Cuidadores/psicología , Servicios de Salud Comunitaria/organización & administración , Servicios de Salud Comunitaria/estadística & datos numéricos , Femenino , Alemania , Humanos , Entrevistas como Asunto , Masculino , Investigación Cualitativa , Apoyo Social
12.
Health Soc Care Community ; 24(3): 283-96, 2016 May.
Artículo en Inglés | MEDLINE | ID: mdl-25727732

RESUMEN

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA 'Instrument for Assessing Home-Based Care Arrangements for People with Dementia') was developed and distributed in a provincial-rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.


Asunto(s)
Cuidadores/estadística & datos numéricos , Demencia/epidemiología , Familia , Población Rural/estadística & datos numéricos , Hijos Adultos , Centros de Día para Mayores/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Alemania/epidemiología , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Humanos , Masculino , Proyectos Piloto , Cuidados Intermitentes/estadística & datos numéricos , Índice de Severidad de la Enfermedad , Factores Sexuales , Esposos , Factores de Tiempo
13.
Aging Ment Health ; 16(3): 378-90, 2012.
Artículo en Inglés | MEDLINE | ID: mdl-22250961

RESUMEN

OBJECTIVES: Including the perspectives of persons with dementia (PwD) is essential in order to organize care structures for them. With this systematic review, we set out to screen the existing scientific evidence on self-expressions of community-dwelling individuals with dementia in order to provide a research base for developing an intervention for persons in early stages of the disease. The leading research questions for this review are: What needs do PwD living at home express? What are their subjective demands? What do they do to cope with their situation? METHODS: We performed a systematic literature review of review publications on subjective experiences of PwD. The publications were analysed using MAXQDA 10 to perform a thematic analysis. RESULTS: We identified 41 relevant reviews, of which 6 met our inclusion criteria. PwD experience the whole range of human emotions. Their needs and demands do not differ significantly from those of other groups of patients with chronic conditions. Coming to terms with the disease and maintaining normality appeared to be major themes. With regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage for PwD, but our findings indicated that they prefer to be included in this process. CONCLUSIONS: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.


Asunto(s)
Demencia , Necesidades y Demandas de Servicios de Salud , Adaptación Psicológica , Consejo , Humanos , Apoyo Social
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