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Innovative Home Care Models for People with Comprehensive Care Needs: Caring Community Living Labs

English title Innovative Home Care Models for People with Comprehensive Care Needs: Caring Community Living Labs
Applicant Kaspar Heidi
Number 183426
Funding scheme NRP 74 Smarter Health Care
Research institution Berner Fachhochschule BFH Gesundheit - aR&D N&D Murtenstrasse 10 - 3008 Bern
Institution of higher education Berne University of Applied Sciences - BFH
Main discipline Health
Start/End 01.03.2019 - 31.08.2022
Approved amount 543'789.00
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All Disciplines (5)

Discipline
Health
Social work
Social geography and ecology
Information Technology
Sociology

Keywords (17)

participatory design; elderly care; living lab; participatory research; social inclusion; social care; caring communities; gender; home care; chronic conditions; 24h-care; assistive technologies; innovation; sustainability; diversity; social learning; action research

Lay Summary (German)

Lead
Möchten in Zukunft mehr Menschen trotz Krankheiten oder Behinderungen zu Hause wohnen bleiben, braucht es neue Konzepte. Die Studie entwickelt, implementiert und evaluiert gemeinsam mit Beteiligten und Betroffenen neue Modelle von „sorgenden Gemeinschaften“ in drei Regionen in der Deutschschweiz.
Lay summary
Ausgangslage
Die ganzheitliche Langzeitversorgung bildet eine wichtige Voraussetzung, damit Menschen trotz gesundheitlichen Einschränkungen zu Hause wohnen bleiben können. Diese umfasst nicht nur die gesundheitliche Pflege, sondern auch Dienstleistungen wie Kochen, Putzen oder die Ermöglichung sozialer Teilhabe. Da sich aktuelle Gesundheitspolitiken überwiegend auf gesundheitliche Aspekte konzentrieren, sind neue Konzepte erforderlich. Modelle sogenannter „sorgender Gemeinschaften“ können helfen, die bestehenden Lücken in der umfassenden Versorgung zu schliessen.

Ziele
Ziel der Studie ist es erstens, Wissenslücken in Bezug auf die häuslichen Versorgungsbedürfnisse und -leistungen zu füllen. Zweitens sollen Modelle von „sorgenden Gemeinschaften“ zur umfassenden häuslichen Versorgung entwickelt, umgesetzt und evaluiert werden. Drittens sollen die gewonnenen Erkenntnisse über das Studiensetting hinaus verbreitet werden. Übergeordnetes Ziel ist es, dazu beizutragen, dass Sorgearbeit als zentrale Gesellschaftsaufgabe verstanden wird.

Projektbeschrieb
An drei unterschiedlichen Standorten in der Deutschschweiz werden in „Living Labs“ (Realumgebungen) Modelle sorgender Gemeinschaften aufgebaut. Diese arbeiten unabhängig voneinander, tauschen sich aber regelmässig über ihre Erfahrungen aus. An Startevents werden lokale Akteure aus Pflege und Politik, aber auch Patientinnen und Patienten sowie Angehörige und die Zivilgesellschaft für eine Mitwirkung gewonnen. Zuerst wird eine gemeinsame Typologie der häuslichen Versorgungsbedürfnisse erstellt. Anschliessend werden mittels partizipativer Methoden innovative Modelle und Angebote entwickelt, welche vor Ort umgesetzt und evaluiert werden. Dabei werden nach Bedarf auch Technik-Anwendungen eingeführt. Schliesslich werden die gewonnenen Erkenntnisse so aufbereitet, dass für weitere interessierte Akteure eine inspirierende Starthilfe bereitsteht.

Wissenschaftliche und soziale Relevanz
Die Studie liefert nicht nur eine Wissensgrundlage zu den häuslichen Versorgungsbedürfnissen und -leistungen, sondern auch konkrete Umsetzungserfahrungen aus drei unterschiedlichen Regionen. Diese werden in einer Toolbox zusammengefasst und weiterverbreitet. Die Studie leistet somit einen relevanten Beitrag, um die Vision von Pflege als demokratische Gemeinschaftsaufgabe in der Praxis zu verwirklichen.
Direct link to Lay Summary Last update: 19.01.2019

Responsible applicant and co-applicants

Employees

Project partner

Collaboration

Group / person Country
Types of collaboration
Gemeinde Belp Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Industry/business/other use-inspired collaboration
Spitex Knonaueramt Switzerland (Europe)
- Industry/business/other use-inspired collaboration
Spitex Zürich-Limmat Switzerland (Europe)
- Industry/business/other use-inspired collaboration
Gemeinde Toffen Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Industry/business/other use-inspired collaboration
SFB 1187 Medien der Kooperation, Projekt A05 Medien der Kooperation in Caring Communities, Uni Siege Germany (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Alterskommission der Gemeinde Obfelden Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Industry/business/other use-inspired collaboration
Netzwerk Caring Communities Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Industry/business/other use-inspired collaboration
Gemeinde Münsingen Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Industry/business/other use-inspired collaboration
Spitex AareGürbetal Switzerland (Europe)
- Industry/business/other use-inspired collaboration
Internationale Bodensee Hochschule (IBH) Living Lab AAL, Projekt «Technik im Quartier» Germany (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Industry/business/other use-inspired collaboration

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Medical Anthropology Schweiz (MAS) Symposium «Partizipative Entwicklung von Caring Communities in der Schweiz – interdisziplinäre Perspektiven» Talk given at a conference Caring Communities Living Labs: Sorgende Gemeinschaften für die Langzeitversorgung 21.02.2020 Bern, Switzerland van Holten Karin;
Modul Sozialstaat / Wohlfahrtsregime der Universität Fribourg, Departement Soziale Arbeit Individual talk Gastvorlesung: Langzeitversorgung im Alter 12.11.2019 Fribourg, Switzerland van Holten Karin;
DGG & DGGG Jahreskongress «Versorgung und Teilhabe». Deutsche Gesellschaft für Gerontologie und Geriatrie Talk given at a conference Zeitvorsorge und Caring Communities: Bezüge und Bruchlinien 20.09.2019 Berlin, Germany Schürch Anita;
DGG & DGGG Jahreskongress «Versorgung und Teilhabe». Deutsche Gesellschaft für Gerontologie und Geriatrie Talk given at a conference Caring Communities und Reallabore. Was kann patizipative Forschung für Caring Communities (nicht) leisten? 20.09.2019 Berlin, Germany Pelzelmayer Katharina; van Holten Karin;
DGG & DGGG Jahreskongress «Versorgung und Teilhabe». Deutsche Gesellschaft für Gerontologie und Geriatrie e.V. Talk given at a conference Caring Communities und Reallabore. Was kann patizipative Forschung für Caring Communities (nicht) leisten? 20.09.2019 Berlin, Germany Pelzelmayer Katharina; van Holten Karin;
2. Clusterkonferenz «Zukunft der Pflege» Talk given at a conference Caring Community Living Lab. ein neuer Ansatz für die Langzeit-Versorgung zuhause 17.09.2019 Berlin, Germany Pelzelmayer Katharina; Müller Claudia; Kaspar Heidi; van Holten Karin;
European Conference for Computer Supported Cooperative Work (ECSCW) Talk given at a conference Designing for Sustainable Caring Communities. The CareComLabs Framework 11.06.2019 Salzburg, Austria Pelzelmayer Katharina; Müller Claudia; Kaspar Heidi;
European Conference on Computer-Supported Cooperative Work: The International Venue on Practice-centred Computing Talk given at a conference Networks of Care in Rural Areas 08.06.2019 Wien, Austria Kaspar Heidi; van Holten Karin; Müller Claudia; Pelzelmayer Katharina;
Designing for Sustainable Caring Communities. The CareComLabs Framework Talk given at a conference 2. Tagung des DGGG-Fachausschusses Alter und Technik. Deutsche Gesellschaft für Gerontologie und Geriatrie 05.06.2019 Siegen, Germany Kaspar Heidi; Pelzelmayer Katharina; Müller Claudia;
Geriatriekongress der Österreichischen Gesellschaft für Geriatrie und Gerontologie Talk given at a conference Ent-Feminisierung von Sorgearbeit – eine Utopie? 26.04.2019 Wien, Austria Kaspar Heidi;


Self-organised

Title Date Place
Session: "Caring Communities: vom vielversprechenden Konzept zur nachhaltigen Umsetzung" am DGG & DGGG Jahreskongress «Versorgung und Teilhabe». Deutsche Gesellschaft für Gerontologie und Geriatrie e.V. 20.09.2019 Berlin, Germany

Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Sozialstamm Kreis 12 Talk 12.03.2020 Zürich, Switzerland Pelzelmayer Katharina; Kaspar Heidi;
Alterskonferenz der Gemeinde Belp Talk 22.01.2020 Belp, Switzerland Schürch Anita; van Holten Karin;
Praxistreffen des Netzwerk Caring Communities Workshop 13.12.2019 Winterthur, Switzerland Schürch Anita;
Alterskonferenz der Gemeinde Münsingen Workshop 24.10.2019 Münsingen, Switzerland Schürch Anita;


Self-organised

Title Date Place
Schulung von Co-Forschenden zur Interviewführung 28.05.2020 Belp (Zoom), Switzerland
Öffentliche Projektsitzung «Sorgende Gemeinde Belp» 04.03.2020 Belp, Switzerland
Schulung Co-Forschende Interviewführung, Leitfadenentwicklung (4 Termine) 14.11.2019 Obfelden, Switzerland
Informationsveranstaltung für Gemeindevertretungen zum Thema «Sorgende Gemeinschaften» 05.09.2019 Münsingen, Switzerland
Informationsveranstaltung für die Gemeinde Obfelden 02.09.2019 Obfelden, Switzerland
Informationsveranstaltung für Gemeindevertretungen zum Thema «Sorgende Gemeinschaften» 06.06.2019 Münsingen, Switzerland

Communication with the public

Communication Title Media Place Year
Media relations: radio, television «Bäup luegt fürenang» (Sorgende Gemeinde Belp) Radio BeO (BeO-Info) German-speaking Switzerland 2020
Media relations: print media, online media «Die ‘Sorgende Gemeinde Belp’ wirkt: Hilfe finden – Hilfe bieten» Internetportal der römisch-katholischen Kirche im Kanton Bern German-speaking Switzerland 2020
Media relations: print media, online media «Hohburg-Quartier soll ‘caring community’ werden» Internetportal Bäup.ch German-speaking Switzerland 2020
Media relations: print media, online media «Nimm eine Karte und schick Freude» (Sorgende Gemeinde Belp) Internetportal der römisch-katholischen Kirche im Kanton Bern German-speaking Switzerland 2020
Media relations: print media, online media «Sorgende Gemeinde – Belp Hohburg, ein Pilotprojekt» Der Belper German-speaking Switzerland 2020
Media relations: print media, online media Haben Sie heute schon Hilfe angenommen? Münsinger Info German-speaking Switzerland 2020
Media relations: print media, online media Mit Schreiben die Einsamkeit vertreiben (Sorgende Gemeinde Belp) Berner Landbote German-speaking Switzerland 2020
Media relations: print media, online media Postkartenaktion Belp ‘luegt fürenang» (Sorgende Gemeinde Belp) Newsletter der Careum Hochschule Gesundheit German-speaking Switzerland 2020
Media relations: print media, online media Betreuung auf verschiedene Schultern verteilen. «Sorgende Gemeinschaft»: Obfelden engagiert sich in Anzeiger aus dem Bezirk Affoltern German-speaking Switzerland 2019
Talks/events/exhibitions Informationsstand Weihnachtsbasar 30.11.2019 German-speaking Switzerland 2019
Media relations: print media, online media Sorge für andere geht alle etwas an. Das Projektteam informiert am 2. September in der «Brunnmatt» Anzeiger aus dem Bezirk Affoltern German-speaking Switzerland 2019

Abstract

In this community-based participatory research project, cultural and health geographers, social anthropol-ogists and socio-information-scientists join forces with political leaders and health professionals to im-prove long-term care for people with comprehensive care needs at home. Social and instrumental care such as cooking and cleaning or accompanying a person for a walk are essential elements of home care allowing people with chronic conditions to stay at home. With increasing age, the need for instrumental care exceeds the need for health care (Höpflinger et al. 2011:8). Yet, cur-rent health policies focus on health care solely, neglecting social and instrumental care (Knöpfel et al. 2018; Wepf et al. 2017). This project deploys a holistic understanding of care, including social, instrumental and health care. It focuses on comprehensive care needs, i.e. situations in which individuals rely on continuous care throughout the daily routine rather than sporadic support at pre-defined times.Staying at home with comprehensive care needs is clearly an individual preference (Bestmann et al. 2014; Lamura et al. 2006; Otto et al. 2015) and the number of people receiving professional long-term care at their private homes is increasing Federal Statistical Office 2017). However, the familial care sys-tem promoted by recent health policies struggles to meet comprehensive home care needs (van Holten et al. 2013; Colombo et al. 2011). Hiring a migrant live-in caregiver is currently the most prevalent practicable option for families seeking support in providing continuous care at home. However, it is problematic (Medici 2015; Schwiter et al. 2018; van Holten et al. 2013) and therefore not a sustainable solution. Experts currently pursue a different path to improve and support care in private households: The introduction of digital technology to private households (e.g. ambient assisted living, telecare) which has been slow on the uptake thus far in general and especially in sensitive settings such as long-term care (Ekeland et al. 2012; Greenhalgh et al. 2015). Alternatively, caring communities is increasingly seen as an expedient concept for healthcare research and policies (Klie 2016). Caring communities are collectives characterized by co-responsibility, co-production and the acknowledgement of interdependency and reciprocity that expands beyond families (Klie 2013). The concept has the potential to spur social transformation towards a more socially sustaina-ble distribution of caring tasks, particularly regarding gender distribution (ibid). Practical implications entail the creating and fostering spaces, networks, structures, processes and conduct that “support people through the many hours, days, weeks, months and sometimes years of living with a life-threatening or life-limiting illness, ageing, grief and bereavement, and long-term caregiving” (Wegleitner, Heimerl, and Kellehear 2016, p. xiv). Normative implications work towards re-positioning care at the center of our society and economy.This project implements the first Living Labs on long-term home care in Switzerland. Three sites - an urban, peri-urban and rural location - in German-speaking Switzerland will be used as case studies. Living Lab is a framework to establish a social space of co-learning and co-innovating (Riva-Rossman et al. 2016). The focus on social, rather than technological innovation distinguishes our Caring Communities Living Labs (CareComLabs) from other Living Labs. Nevertheless, digital technologies will be used as enablers, given they are deemed helpful. We start with our confirmed practice partners - professional home carers and political leaders - and con-tinuously expand our network to multiple stakeholders such as patients, family and professional care-givers, political leaders etc. in order to develop locally relevant tailored initiatives/solutions. Community-based participatory research (CBPR) methods will be consequently deployed, including stakeholders in data and knowledge production as well as in defining, implementing and evaluating social initiates.The objective of this project is threefold: 1) To acquiring missing knowledge on comprehensive home care needs and services, 2) to co-productively develop, implement and assess novel models of compre-hensive home care and 3) to facilitate the dissemination and transfer of gained insights on the effective-ness of novel care models and the processes to implement them. 1)Exploration and knowledge production: To collaboratively explore and measure the needs in comprehensive home care and gaps in the provision thereof in three pilot communities and the potential of existing community-based care initiatives to be adopted for comprehensive home care.2)Experimentation and innovation: To collaboratively and continuously develop, test, evaluate and adjust novel solutions responding to the identified needs and merge them into a community-based model for comprehensive home care.3)Evaluation and knowledge transfer: To collaboratively evaluate these processes of socio-politico-technological innovation and consolidate methodological reflections, empirical findings and lessons learned into a guidance toolbox that facilitates knowledge transfer to other communities wishing to adopt community-based models of home care. The project yields the following outputs:1)Empirically-grounded typologies of comprehensive home care needs and services (available, re-quired, and claimed) and effective local caring community initiatives provide insight into health care structure and utilization in Switzerland with a focus on comprehensive care that often is ne-glected in current health policies.2)Existing home care services at the three case study sites are adjusted or complemented by novel services to meet the need of individuals with comprehensive care needs. Sustainable Living Labs provide a social space for co-innovation to continuously improve and adjust services and initiatives to the needs of its community beyond the project’s duration.3)Popular scientific and scientific publications disseminate the idea of Caring Communities and Living Labs and inspire further individuals and collectives. A freely available guidance toolbox compiles the lessons learned from the three pilot Living Labs and allows communities interested to adopt the concept and transfer it to their locally specific contexts. The project yields immediate impact on the society through the user-centric improvement of long-term home care services for individuals with chronic conditions and comprehensive care needs. Additionally, the project works towards transforming the vision of care as a democratic community task into a lived practice. Hence, it contributes to building a system of home care that fosters gender equality and is more socially and economically sustainable. “The world will look different if we move care from its current peripheral location to a place near the center of human life” (Tronto 1993: 101).
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