a. Perspectives on volunteer-professional collaboration in palliative care: A qualitative study among volunteers, patients, family carers and healthcare professionals
All authors: Steven Vanderstichelen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Joachim Cohen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University)
Yanna Van Wesemael, Palliabru
Prof. Luc Deliens, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Kenneth Chambaere, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Presenting Author: Steven Vanderstichelen
Title: Perspectives on volunteer-professional collaboration in palliative care: a qualitative study among volunteers, patients, family carers and healthcare professionals.
To bridge professional healthcare and the community, and to support the development of Compassionate Communities, close and collaborative volunteer-professional relationships are a necessity, both within the community itself as in institutional care. However, little is known about current palliative care related collaboration between professionals and volunteers of various organizations across the health care system. Such insights are relevant for future developments regarding volunteer efficiency, quality of care and the capacity of volunteer care to complement healthcare services and professionals.
To explore characteristics of and barriers to effective volunteer-professional collaboration in palliative care.
A qualitative study was conducted using semi-structured focus groups with volunteers, nurses, psychologists and family physicians and interviews with people with serious illnesses and with family carers in Belgium in 2017. Participants were recruited from hospital, home-care, day-care and live-in services.
Seventy-nine people participated in the study. Volunteers collaborate mostly with nurses, less with psychologists but not with physicians. Volunteer-professional collaboration entails mutual information-sharing regarding patient conditions and coordination of care provision, while nurses and psychologists provide emotional and functional support for volunteers. Lack of access to nurses, of leadership and of patient-information sharing guidelines were the most prominent barriers to collaboration.
Volunteers are in the front line of palliative care provision and collaborate intensively with nurses, particularly in dedicated palliative care services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration.
b. Country Cares: Creating a compassionate palliative care community in remote central Queensland
All authors: Michael Bishop (CEO Central Highlands Healthcare)
Noelene Lyons (Volunteer Coordinator)
Jan Catip (Registered Nurse)
Loraine Marsh (President CWA Central Highlands)
Lorraine Donohue (Volunteer)
Carolyn Daniels (Volunteer)
Presenting author: Michael Bishop
Emerald in Central Queensland is a remote community with inadequate palliative care services. Many local people with a palliative care diagnosis wishing to live and die at home are unable to have their wishes met. This inadequacy is contributed by a lack of funding to support community base nursing services, access to specialist services; funding for equipment and home modifications and the tradespeople to undertake the work. Many older people and people with a palliative care diagnosis leave the community for coastal community to access supports.
This presentation describes a process led by the Emerald Medical Clinic and supported by the community to establish a volunteer service for local people and their carers. The service adopted the training program developed by the Victorian Palliative Care Association and aims to develop an ongoing compassionate community.
The paper goes on to describe the supports offered to volunteers and the reasons that the volunteers have become involved in the Community Palliative Care Volunteer Service. Reasons given by volunteers for joining the program have included: personal care experience; contributing back to the community; wish to help others and decreasing social isolation.
The Emerald Medical Group now has plans to develop a small Palliative Care Centre offering some day respite.
The paper links to the Conference themes of Building connections and partnerships and End of life is everybody’s business
c. Social innovation in partnership
Vicki Barry Business Development Lead - Palliative Care WA
Barbara Binns Weavers Implementation Lead - The Australian Centre for Social Innovation
Weavers was created through a co-design process by The Australian Centre for Social Innovation (TACSI) in 2011. We aimed to address the significant challenges faced as a family carer which occur at many stages along the caring journey from diagnosis towards end of life. The Weavers model creates ways to respond to the unique and changing needs along the way.
As a strength based model Weavers has demonstrated the ability to support carers regain a sense of control and improve quality of life. Through recruitment of volunteers with personal caring experience and providing specific training and support the Weavers model offers valuable support to carers and activates knowledge and experience within communities. Weavers is a model of peer support that capitalises on the skills and knowledge of lived experience.
Since 2016 Weavers has been adapted to many caring contexts including community and residential care, disability and palliative care. Weavers fits within the Compassionate Communities approach in adding to the ways in which communities’ support people at the end of life.
Through a partnership with Palliative Care WA and TACSI the Weavers program has been developed with context specific adaptions in Albany Community Hospice - a community where what it means to be a Compassionate Community is seen in action. As a flagship site Albany Hospice is demonstrating what it takes to implement an innovative approach for carers in community. The vision of PCWA is to develop the reach of Weavers across regional communities to provide community support where service provision may be reduced.
During this presentation Vicki Barry (Business Development PCWA) and Barbara Binns (Weavers Implementation Lead TACSI) would like to share with you how Weavers creates ways to harness the wealth of knowledge, expertise and understanding that lived experience brings in supporting communities towards and through the end of life.
d. Guess what happened on the way to our research site? Indigenous research methods guide and protect
Dr Tess Moeke-Maxwell, Mrs Kathlene Mason, Professor Merryn Gott, Dr Lisa Williams
Presenting Author: Dr Tess Moeke-Maxwell
Previous research findings identified the critically important role Māori whānau (including extended whanau) play in caring for (kaumātua) older people at end of life. The care values whānau bring to this care work are based on ancient cultural and spiritual principles passed down by tūpuna (ancestors). The Te Ārai Palliative Care and End of Life Research Group designed the Pae Herenga study to investigate these traditional end-of-life customs. A research approach was needed that could keep participants with a life limiting illness culturally and spiritually safe during face-to-face interviews and digital story workshops, as well as bereaved whānau.
We explore the value of using a Kaupapa Māori Research approach in a qualitative investigation of indigenous New Zealanders end of life care customs by drawing on digital stories. Kaupapa Māori Research methods are explored for their ability to inform mutual, reciprocal, empathic, respectful and culturally safe relationships between researchers and participants.
A Kaupapa Maori Research approach provided the flexibility needed to cope with unanticipated cultural obligations that emerged during the course of fieldwork. Indigenous kaumātua involvement during fieldwork excursions provided the research team with crucial cultural guidance and support. The presentation will provide two examples where the Pae Herenga study’s research approach strengthened the research team and protected participants.
Kaupapa Māori Research methods provide a safe and ethical approach to working with indigenous people in end-of-life studies.