Caring Community in Living and Dying Engaging Communities through Participatory Research an Austrian Case Study

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1 Caring Community in Living and Dying Engaging Communities through Participatory Research an Austrian Case Study Klaus Wegleitner, Patrick Schuchter & Sonja Prieth Dr. Klaus Wegleitner, Assistent Professor Institute of Palliative Care und Organisational Ethics Faculty of Interdisiciplinary Studies (IFF Vienna) / University Klagenfurt 4th Public Health & Palliative Care Conference th 16th May, Bristol, England IFF Vienna

2 Hospice- and palliative care in Austria Graded hospice and palliativ care plan Austria 2004 Focus: Establishing specialist palliative care services Social challenges: death and dying are still delegated to organizations and experts the original idea of the hospice movement, to reintegrate death into everyday living patterns and to make dying and loss normal valued parts of life, cannot be promoted in this way Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Klagenfurt I Graz I Wien

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

3 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 Klagenfurt I Graz I Wien

4 Project region: Landeck Austria / 8.5 million / km2 Landeck, a district capital with 8000 inhabitants situated in the rural mountain region of western Tyrol in Austria. Landeck IFF Vienna

5 IFF Vienna

6 Aims strengthening networks and solidarity in the community improving the local relationship between formal and informal caregivers in end-of-life care raising awareness within the local population about existential questions concerning vulnerability, frailty, dying, death, loss and grief, and about questions of caring democracy (Tronto 2013), prevention and caring networks fostering self-help resources developing and supporting local initiatives and projects in diverse community contexts Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Klagenfurt I Graz I Wien

7 Phase 1: Describing, analysing and appreciating local care cultures Project phases Phase 2: Strengthening local networks and self-help resources Phase 3: Supporting implementation and sustainability Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Klagenfurt I Graz I Wien

8 Project architecture and process steering committee kick off public events & ongoing public relations citizens forum public exhibition public future workshop strengthening local care network care networks workshop ACP workshop grief and bereavement dementia social platform care networks research & development describing, analyzing and appreciating local care cultures participatory research process local care team developing initiatives / measures / projects network analysis measures & initiatives & projects implementing, supporting and supervising implementation z.b. school projects / public last aid course, caretaker/minder in the community, talk cafe, care coordinator, strengthening community networks, supporting family caregivers, etc. Jan 14 Juni 14 Sep 14 Jan 15 Okt 15 IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

Phase 1: Describing, analyzing and appreciating local care cultures / participatory research process steering committee local policy kick-off workshop interview pastor focus group coordinators of

9 Phase 1: Describing, analyzing and appreciating local care cultures / participatory research process steering committee local policy kick-off workshop interview pastor focus group coordinators of self-help & volunteers informal care network focus group hospice volunteers Interview undertaker workshop strengthening care networks focus group 1 family caregivers focus group 2 family caregivers people concerned formal care network focus group 3 family caregivers focus group GP s focus group primary home care local care team community / citizens public events / public relations IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

10 Ingredients of a compassionate community professionals volunteers family caregivers networking, mediating, consulting facilitating preparedness uncover practical wisdom talking about life and death caretaker raising public awareness local care team keeping eyes open, ears tuned enabling mutual support not moralizing fostering care justice caring about experience of life Basis: ingredients of a caring community keeping each other in mind / knowing about each other access to house and soul relationship between informal and formal care network role recognition and confidence building expert knowledge IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

Local initiatives to make a caring community a reality project management IFF/THG steering committee engaged citizens local care team representatives of formal and informal care networks public last

11 Local initiatives to make a caring community a reality project management IFF/THG steering committee engaged citizens local care team representatives of formal and informal care networks public last aid course caretaker / minder in the community caring culture and schools strengthening community networks caring coordination support for family carers public events IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

12 IFF Vienna CITIZENS FORUM, PUBLIC HALL LANDECK

13 Citizen suggestion card What s the challenge/the problem? Who? person, organisation measures We suggest We expect IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik Most suggested measures concern strengthening neighbourhood culture social participation getting information and coordination of care spaces for conversation and talking about

Harm reduction the last days and hours 4.

14 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

15 the question of sustainability Governance for and of caring communities Caring democracy Compassionate communities make an important contribution to care for our world, and therefore to a sustainable and caring society Fakultät für Interdisziplinäre Forschung IFF Vienna und Fortbildung Klagenfurt I Graz I Wien

Thank you for your kind attention! References Abel, J., Walter, T., Carey, L. B. et al. (2013) Circles of care: should community development redefine the practice of palliative care?

16 Thank you for your kind attention! References Abel, J., Walter, T., Carey, L. B. et al. (2013) Circles of care: should community development redefine the practice of palliative care? BMJ Supportive & Palliative Care. doi: /bmjspcare Barry, V. and Patel, M. (2013) An overview of compassionate communities in England. Tipton, London: Murray Hall Community Trust; National Council for Palliative Care Dying Matters. Dörner, K. (2007) Leben und Sterben, wo ich hingehöre. Dritter Sozialraum und neues Hilfesystem. Neumünster: Paranus Verlag. Heimerl, K. and Wegleitner, K. (2013) Organizational and health system change through participatory research. In J. Hockley, K. Froggatt, and K. Heimerl (eds.) Participatory Research in Palliative Care. Actions and Reflections. Oxford: Oxford University Press, Kellehear, A. (2013) Compassionate communities: end-of-life care as everyone s responsibility. Q J Med. doi: /qjmed/hct200. Minkler, M. and Wallerstein, N. (eds.) (2003) Community-Based Participatory Research for Health. San Francisco: Jossey- Bass. Nussbaum, M. C. (2003) Upheavals of thought: The intelligence of emotions. Cambridge: Cambridge University Press. Rosenberg, J. P. and Yates, P. M. (2010) Health promotion in palliative care: the case for conceptual congruence. Critical Public Health, 20/2, Sallnow, L. and Paul, S. (2014) Understanding community engagement in end-of-life care: developing conceptual clarity. Critical Public Health, DOI: / Tronto, J. C. (2013) Caring Democracy. Markets, Equality, and Justice. New York, London: New York University Press. WHO - World Health Organization UNICEF (1978) Primary Health Care: Report of the International Conference on Primary Health Care. Alma-Ata USSR Sept WHO. Geneva. WHO -World Health Organization (1986) Ottawa charter for health promotion. Health Promotion 1/4: i v. IFF Wien Fakultät für Interdisziplinäre Forschung und Fortbildung Institut für Palliative Care und OrganisationsEthik

unathorized use not permitted

unathorized use not permitted THE REAL PROMISE-PALLIATIVE CARE AS PUBLIC HEALTH HEALTH SYSTEM PERFORMANCE RESEARCH NETWORK DECEMBER 1, 2015 Denise Marshall B.Sc., MD, CCFP, FCFP Compassionate Communities Lead, Pallium Canada Professor