Caring/Compassionate Communities and Caring ...

Caring/Compassionate Communities and Caring Institutions need one another The role of Participatory Action Research (PAR) in strengthening the culture of care at the end of life: Reflections on Austrian experiences

Dr. Klaus Wegleitner, Assistant Professor Institute of Palliative Care und Organisational Ethics Faculty of Interdisiciplinary Research (IFF Vienna) / Alpen-Adria University of Klagenfurt

Public Workshop, May 3rd, University of Bradford

IFF Vienna Institute of Palliative Care and Organisational Ethics

Overview  IFF Vienna: Issues and research topics / preliminary remark

 Fundamental background: Care embedded in a web of relationships / in the community  Caring Institutions and the role of collective learning (through PAR)  organizational culture  organizations as part of the community

 Caring Commmunity (role of PAR)  Outlook: Socio-political need for action Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Research Topics & Perspectives IFF Vienna 1998

2014

2017

Inter- and Transdisciplinary (Intervention)Research / PAR in Hospice- and Palliative Care /

Caring Institutions Caring / Compassionate Community „Care goes/is public“ Focuses: - Developing „Hospice- and Palliative Culture“ in Organizations & Regional Health Care Systems / Primary Care: Long Term Care, Home Care

Interprofessional- and Interdisciplinary Education and Teaching

Health Promoting Palliative Care Sustainability - Caring Society Care Ethics Ethics from the „Bottom up“ Communal Ethics

Organisational Ethics Basic Research in End-of-Life Care Palliative Care for Older People Gender Care

Dementia Care Hospice History

Gender & Diversity Justice & Equity Care Policy Democracy Citizenship Marginalized People Societal Justice

Interdisciplinary doctoral program Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Public Health Caring Society – Sustainable Society Caring Policy Caring/Compassionate Communities Caring Institutions Care Ethics

End-of Life Care Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Care as & embedded in a web of relationships grandad grandad

granny

granny

Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

„Ecology of Care“ – Co-Creation of care webs End of life: the caring network view: Debbie Horsfall et al. 2015

Horsfall, D., Yardley, A., Leonard, R., Noonan, K., & Rosenberg, J. P. (2015). End of Life at Home: CoCreating an Ecology of Care. Penrith, N.S.W.: Western Sydney University. Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Caring network view Meaning for the organization of care  Transformation of individual focused services towards social environment and community orientation  e.g. coordination, networking activities, social learning processes, visiting services, participation and empowerment of civil society, etc.

 Strengthening the ‘whole’ social capital and social cohesion of the community  Strengthening the social participation of marginalized people  Developing organizational culture Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Concept of organisations / Systems Theory  Organisations are complex social systems  Organisations steadily pursue a goal and exhibit a formal structure.  organisation constitutes of communication not of people  organisations are considered to be ‘autopoetic’  The focus in organizations, according to Luhmann (2006), lies on decisions.  Collective Learning through organizing decisions Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Niklas Luhmann

Organizational learning through organizational development and action research  Organizational development  Establishing ‘reflective loops’ that help organisations to observe and describe themselves and to generate decisions (Luhmann 2006).

 Action Research  is providing reflective loops  is helping to create spaces where organisations can deal with their problems by changing routine processes and standard procedures.


Organizational Culture concept of Edgar Schein (…) a pattern of basic assumptions invented, discovered, or developed by a given group as it learns to cope with its problems of external adaptation and internal integration - that has worked well enough to be considered valid and, therefore to be taught to new members as the correct way to perceive, think, and feel in relation to those problems. (Schein, Edgar H. (1987): Organizational Culture and Leadership. San Francisco, London: Jossey-Bass; p.9)

Organisational culture can only be changed, when there are times and settings for reflection and collective learning that help to understand and challenge the basic underlying assumptions. Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Dignified culture of care in organizations needs

 Collective „learning“: Learning of persons, organizations, networks and communities  Who is concerned and has to be involved?  Needs of women, men and children concerned and their related persons  Participation of carer (formal & informal)  Participation of „relevant environments“ Collaborating organizations/services Citizens & Community

 Spaces for ethical deliberation Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Caring Institutions  “The chances are good that the best forms of institutional care will be those which are highly deliberate and explicit about how to best meet the needs of the people who they serve. This requirement in turn requires that such institutions must build in adequate and well conceived space within which to resolve such conflict, within the organization, among the institutional workers and their clients, and more broadly as the institution interacts in a complex world in order to resolve such conflicts.” (Tronto 2010, 169) Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

key elements for participatory research in end-of life care (Heimerl, Wegleitner 2013)       

Participation and democracy Empowerment Appreciative organisational diagnosis Complex problems require complex solutions Inter-disciplinary and multiple perspectives Different interventions at different levels Relationship between individual and organisational learning processes  Relationship between theory and practice  Cultural sensitivity reflecting regional characteristics Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Palliative Care Culture as process of participation and multiperspectivity / nursing homes in the community Staff is interviewing residents (talking about death and dignity), relatives, community members, volunteers, collaboration partners a) Research team and staff jointly generated interview guidelines b) Interview training c) Interviews and documentation d) Reflexive analyses e) Developing measurments

staff

nursing homes

residents relatives Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

COMMUNITY Volunteers, community members, collaboration partners

Organizations embedded in the community Caring culture in and between organisations & in the local community

Creating new, or transform old forms of solidarity and compassion in the ‘third social space’ (Dörner, 2007) Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Care, democracy and a goof life  Caring is a complex process that includes ‘caring about, caring for, care giving, care receiving and, in order to democratize care, caring with’.  This final phase of care requires that caring needs and the ways in which they are met need to be consistent with democratic commitments to justice, equality, and freedom for all (Tronto 2013, 23).


Tronto’s ethics of care raises fundamental (political) questions  How can caring responsibilities be distributed in societies?  How can they be assigned democratically (consistent with justice, equality and freedom)?  How can we ensure the greatest possible participation of citizens in this assignment of responsibilities?


Landeck Caring Community in Living and Dying Community-based participatory research project, Landeck/Tyrol, Austria Klaus Wegleitner, Patrick Schuchter, Sonja Prieth


Caring Community in Living and Dying Project scope  partnership with the Tyrolean Hospice Association  as a practice partner and as a genuine research partner  project-partnership with local officials for social affairs and the municipality of Landeck  Funded by the Stifterverband für die Deutsche Wissenschaft (Association for the Promotion of Sciences and Humanities in Germany)


Project region: Landeck Austria / 8.5 million / 84 000 km2

Landeck, a district capital with 8000 inhabitants situated in the rural mountain region of western Tyrol in Austria. IFF Vienna Institute of Palliative Care and Organisational Ethics

Landeck


Project phases  Phase 1 – “Survey”: Describing, analysing and appreciating local care cultures and traditions in end-of-life care.

 Phase 2 – “Awareness and Engagement”: Raising public awareness, enabling public engagement and illustrating local care resources to strengthen care networks and self-help resources.

 Phase 3 – “Implementation and Sustainability”: Supervising and supporting the implementation of initiatives, mini-projects and measurements in various community spheres and developing sustainability strategies with local care team. Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien

Phase 1: Describing, analyzing and appreciating local care cultures / participatory research process steering committee

local policy kick-off workshop focus group coordinators of self-help & volunteers

informal care network

focus group hospice volunteers

interview pastor

Interview undertaker

focus group 1 family caregivers



people concerned workshop strengthening care networks

focus group GP´s

formal care network

local care team IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

focus group primary home care

community / citizens public events / public relations

‘Ingredients’ of a supporting web of caring relationships (Schuchter, Wegleitner, Prieth 2016)       

Contributing specific competencies Sharing wisdom of life Keeping each other in mind Sensitively gaining access to house and soul Vicariously organising care Moderating care arrangements (in families) Making freedom from care (“Sorglosigkeit”) possible


CITIZENS FORUM, PUBLIC HALL LANDECK


Citizen suggestion card What´s the challenge/the problem?

Who? person, organisation

measures

We suggest …

We expect …

Most suggested measures concern … • strengthening neighbourhood culture • social participation • getting information and coordination of care • spaces for conversation and talking about

IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

Public „last aid“ course Preventing, caring and a good life until the end 4 evenings / a 3 hours 1. Organizing and accepting help – take care of someone 2. Prevention, planning and decision making 3. Harm reduction – the last days and hours 4. Farewell, grief and regain vitality • Developed by a transdisciplinary work group • Hosted by local informal (hospice volunteers and formal caregivers (primary health care) • Continuous media work IFF Vienna Institute of Palliative Care and Organisational Ethics

Caring Culture: an issue for young people „Talking about aging and dying“ A film by students


Local initiatives to make a caring community a reality project management IFF/THG

local care team

steering committee

representatives of formal and informal care networks

engaged citizens

public last aid course

caretaker / minder in the community

caring culture and schools

strengthening community networks

public events

IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

Landecker Handbooklet: Wisdom of care

caring coordination

support for family carers

Challenges & questions in developing caring/compassionate communities  How can we ensure participation of the community in it´s diversity?  How can we reach and include marginalized people?  How can we avoid reproducing old patterns of inequality in care work?  How can we avoid technocratic social planning?


„Governmentality“ (Foucault) Care Policy framework

Compassionate Communities & Caring Institutions • Particpation of ALL concerned, democracy and social participation • Sharing of existential experiences • Organizing existential conversations and enabling ethical dialogue / ethical reflection of the good & resolve conflicts • „Circles of Care“ in subsidiarity • Co-Creation of Care / in shared responsibility / fair distribution

Community as „web/network of care relationships“

Community of Citizens Governmentality

„(…) participation and engagement provide, however these are produced, important ways that people create networks and support systems for each other“ Allan Kellehear (2005)

Thank you for your kind attention! Ass.-Prof. Mag. Dr. Klaus Wegleitner [email protected]