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.
Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien
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).
Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien
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?
Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien
Landeck Caring Community in Living and Dying Community-based participatory research project, Landeck/Tyrol, Austria Klaus Wegleitner, Patrick Schuchter, Sonja Prieth
IFF Vienna Institute of Palliative Care and Organisational Ethics
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)
Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien
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
IFF Vienna Institute of Palliative Care and Organisational Ethics
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
focus group 2 family caregivers
focus group 3 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
Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien
CITIZENS FORUM, PUBLIC HALL LANDECK
IFF Vienna Institute of Palliative Care and Organisational Ethics
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
IFF Vienna Institute of Palliative Care and Organisational Ethics
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?
Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Institute of Palliative Care and Organisational Ethics Klagenfurt I Graz I Wien
„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]