Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Abstracts WA4
VOLUNTEERING IN PARTNERSHIP: A PUBLIC HEALTH APPROACH TO DELIVERING COMPASSIONATE CARE TO THOSE AT END OF LIFE AND THE FRAIL ELDERLY
Gail Wilson. St Luke’s Hospice, Plymouth, UK 10.1136/bmjspcare-2015-000906.4
Background Young people are often denied volunteering experiences with vulnerable dying people as this is considered to be ‘too distressing’. This project challenged this paternalistic attitude and trained young people to volunteer in the hospice, and other organisations to enhance the delivery of compassionate care. Aim 1. To promote dignity in care, for older people, people with dementia, those at end of life and those with learning disabilities. To reduce social isolation and the stigma associated with dying and being old. 2. To create new volunteering opportunities for young people to raise their awareness of the needs of the dying and the frail elderly. 3. Develop a model of best practice – that could be replicated in other parts of the country. Method A health promotion approach was used combining education and a community development, partnership approach. Results 120 Volunteers delivered over 3,650 hrs of volunteering activities, supporting individuals to engage in social activities. The project broke myths about having 16–18 year olds volunteering. The relationship between the hospice and the local community has strengthened and the employability skills for the young people taking part have increased. 16% of those who responded to an exit survey had gained full time employment, 9% had gained university places. Conclusion The personalisation of care for the frail elderly and those at end of life has increased by the use of volunteers. Young volunteers need mentoring. Staff needs support to feel confident to utilise the volunteers and let go of myths about risks.
OA5
EMPOWERING TEN CULTURALLY AND LINGUISTICALLY DIVERSE COMMUNITIES IN MELBOURNE, AUSTRALIA, TO ACCESS CULTURALLY RESPONSIVE PALLIATIVE CARE
Odette Waanders, Michael Kennedy, Michelle Paterson, Harriet Radermacher, Elena Petreska, Susan Timmins, Annmarie Ferguson. Palliative Care Victoria Inc., Australia 10.1136/bmjspcare-2015-000906.5
Background This project addresses low levels of awareness and use of palliative care among ten culturally and linguistically diverse (CALD) communities in Melbourne, Australia. Aim To increase awareness, understanding and use of palliative care among the Arabic speaking, Chinese, Croatian, Greek, Italian, Macedonian, Maltese, Polish, Turkish and Vietnamese communities in Melbourne and to strengthen the provision of culturally responsive palliative care. Method In July 2013 the palliative care and ethnic peak bodies initiated a two-year project with 10 ethnic communities (5 per year) to deliver peer education sessions about palliative care in community languages. Adjunct activities include community engagement, relationship-building, media, cultural responsiveness education for palliative care services, and evaluation. Results As at mid-July 2014, feedback from 837 participants (80% of 1050 attendees) at 37 community education sessions
A2
for 4 CALD communities indicated that 68% did not know about palliative care before the session. 90% had learnt new information, 90% had an intention to tell friends and family about palliative care and 90% thought palliative care was a good idea. Updated results will be provided. Conclusion Participatory and engagement strategies are needed to improve awareness of palliative care among CALD communities. The formation of community reference groups is a valuable strategy that respects community leadership, expertise and networks. The participation of CALD communities in tailoring education and information to meet specific cultural, spiritual and linguistic needs is essential. The participation of palliative care services in project activities is valued and strengthens relationships of trust and understanding.
OA6
TALKING ABOUT DEATH WON’T KILL YOU; INTRODUCING DIE-ALOGUES
Katherine Kortes-Miller. Hospice Northwest, Canada 10.1136/bmjspcare-2015-000906.6
Background Death holds a significant place in societies despite not being a direct or first-hand experience for many. Fewer people now die in their homes surrounded by family, and we have distanced ourselves from death by geography and the medicalisation of death. Our understanding of dying and death is influenced by the communities we live in. Aim Die-alogues is an initiative hosted by Hospice Northwest intended to support meaningful conversations about dying, death, life and living. The mission of Hospice Northwest is to support end-of-life care in our community. By engaging in open, easy and respectful discussions about death and dying ourselves, we can better prepare ourselves to care for others as they face their own dying and that of those they love. Methods Responding to an identified community need, we have partnered with community organisations including a music and dance studio, a leadership group and a research centre to facilitate this initiative. Our approach has been innovative and included a flash mob, Jeopardy games and various other strategies to facilitate and support community members’ discussions of living until we die. Results Evaluations are positive. Our community has requested more opportunities for Die-alogues to continue. This initiative will hopefully expand in our region including within neighbouring First Nations communities. Conclusion Our standing room only events demonstrate that our community wants to engage and be active participants in learning about dying and death and supporting one another. This presentation/poster will share some of the lessons learned from the Die-alogues community engagement process.
WA7
REFINING AND SHARING OUR METHODS – HOW TO RESEARCH THE PUBLIC HEALTH APPROACH TO PALLIATIVE CARE?
1
Joachim Cohen, 2Libby Sallnow, 3Carol Tishelman. 1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University; 2St Joseph’s Hospice London and the University of Edinburgh, UK; 3Karolinska Institute, Stockholm, Sweden
10.1136/bmjspcare-2015-000906.7
According to the WHO, public health has a mandate to: 1) Assess and monitor the health of communities and populations SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Abstracts to identify health problems and priorities, 2) assure that all populations have access to appropriate and cost– effective care, 3) devise public policies and actions to solve identified local and national health problems and priorities. In line with this, public health has increasingly provided a framework for descriptive and epidemiological palliative care research, related to the first two mandates. Demographic, epidemiological, and sociological changes are increasingly asking for a broader public health approach to palliative care research, one that incorporates the principles of health promotion. This workshop will be led by an international collaborative group interested in how these different mandates relate to one another in developing a public health and palliative care research agenda. The first presentation will focus on the more traditional public health and epidemiological research approach and how it has addressed some public health challenges in palliative care but has missed or ignored others. The second presentation will focus on the New Public Health approach and how this has been translated into research evaluating health promoting palliative care and related interventions, but faces the major challenge of developing an appropriate thorough methodological and evidence base. The presentations will examine the contribution of each tradition and determine how they can inform and strengthen one another. The workshop will conclude with a panel discussion to engage participants to develop a research agenda for the future.
OA8
CARING FOR THE FAMILY CAREGIVER: WORKING WITH VOLUNTEERS TO IMPLEMENT AND IMPROVE A SERVICE TO ENABLE FAMILY CAREGIVERS TO MAINTAIN THEIR OWN WELLBEING
1,2
S Robin Cohen, 1Susan Keats, 1Maria Cherba, 1Dawn Allen, 1,3Christopher J MacKinnon, Vasiliki Bitzas, 4Naomi Kogan, 1,2Jamie L Penner, 1,2Monica Parmar Calislar, 5Anna Feindel, 1,4 Bernard Lapointe, 6Sharon Baxter, 5Suzanne O’Brien, 7Kelli Stajduhar. 1McGill University; 2 Lady Davis Institute for Medical Research, Jewish General Hospital; 3McGill University Health Centre; 4Jewish General Hospital; 5Hope & Cope; 6Canadian Hospice Palliative Care Association; 7University of Victoria 1
10.1136/bmjspcare-2015-000906.8
Background Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. Aim To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers’ roles with the project as both agents of change to the service and as support for the caregivers. Method A qualitative formative evaluation informed by Guba and Lincoln’s Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers’ written reflections. Results Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone’s roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers’ challenges
SPCare 2015;5(Suppl 1):A1–A32
included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). Conclusion Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.
OA9
IMPACT OF MEDICATION SAFETY IN THE PALLIATIVE CARE HOME SETTING – THE CARERS’ PERSPECTIVES ABSTRACT
Caroline Short, Anne Scott. Cessnock Kurri Kurri Singleton Palliative Care, Australia 10.1136/bmjspcare-2015-000906.9
Background A Health Promoting Palliative Care philosophy, Kellehear (1999), was embraced to develop medication safety in the palliative care home setting in response tothe widespread informal practice of carers administering subcutaneous medications, especially in the last few days of life. Evaluations have demonstrated a legal and ethical framework for standardised practices enabling patients choices in place of care and death however a carer survey has been conducted to gain carer’s perspectives. Aim To ascertain how palliative carers feel about participating in administering subcutaneous medications in the home setting during end of life care. Methods Carers who accepted the invitation to participate, were surveyed by telephone 3–6 months post client death. Questions were provided pre-interview – 9 closed and 4 open-ended. Results 100% carers felt they worked in partnership with the team to manage symptoms. 100% believed training and support was easy to understand and inspired confidence. 81% felt they were able to give medications confidently– 19% exercised their right to not participate. Comments demonstrated the support, reassurance, and increased self-worth of the carers developing a great sense of achievement. “Couldn’t have been a happier time for me that he died in bed with his arm around me.....the grandkids were here.... we would all laugh together...” Negative aspects were around bereavement. Conclusion Common themes demonstrated the importance of place of care an d death, pain control, access and timing of information and support, medication safety, exercising Choices, self-confidence, knowing and controlling care of dying and death, and bereavement care. REFERENCE 1
Kellehear A. Health promoting palliative care. Melbourne: Oxford University Press, 1999.
WA10
WORKING IN PARTNERSHIP WITH PEOPLE WITH LEARNING DISABILITIES: ACADEMICS AND PEOPLE WITH LEARNING DISABILITIES WORKING TOGETHER TO DISSEMINATE THE FINDINGS OF A CONFIDENTIAL INQUIRY INTO DEATHS OF PEOPLE WITH LEARNING DISABILITIES THROUGH FILM
Lesley Russ. Bristol City Council, UK 10.1136/bmjspcare-2015-000906.10
Background In England, between 2010–2013, a Confidential Inquiry into premature Deaths of People with Learning Disabilities was commissioned by the Department of Health. This took A3
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
WA7 Refining and sharing our methods − how to research the public health approach to palliative care? Joachim Cohen, Libby Sallnow and Carol Tishelman BMJ Support Palliat Care 2015 5: A2-A3
doi: 10.1136/bmjspcare-2015-000906.7 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A2.4
These include:
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Abstracts WA4
VOLUNTEERING IN PARTNERSHIP: A PUBLIC HEALTH APPROACH TO DELIVERING COMPASSIONATE CARE TO THOSE AT END OF LIFE AND THE FRAIL ELDERLY
Gail Wilson. St Luke’s Hospice, Plymouth, UK 10.1136/bmjspcare-2015-000906.4
Background Young people are often denied volunteering experiences with vulnerable dying people as this is considered to be ‘too distressing’. This project challenged this paternalistic attitude and trained young people to volunteer in the hospice, and other organisations to enhance the delivery of compassionate care. Aim 1. To promote dignity in care, for older people, people with dementia, those at end of life and those with learning disabilities. To reduce social isolation and the stigma associated with dying and being old. 2. To create new volunteering opportunities for young people to raise their awareness of the needs of the dying and the frail elderly. 3. Develop a model of best practice – that could be replicated in other parts of the country. Method A health promotion approach was used combining education and a community development, partnership approach. Results 120 Volunteers delivered over 3,650 hrs of volunteering activities, supporting individuals to engage in social activities. The project broke myths about having 16–18 year olds volunteering. The relationship between the hospice and the local community has strengthened and the employability skills for the young people taking part have increased. 16% of those who responded to an exit survey had gained full time employment, 9% had gained university places. Conclusion The personalisation of care for the frail elderly and those at end of life has increased by the use of volunteers. Young volunteers need mentoring. Staff needs support to feel confident to utilise the volunteers and let go of myths about risks.
OA5
EMPOWERING TEN CULTURALLY AND LINGUISTICALLY DIVERSE COMMUNITIES IN MELBOURNE, AUSTRALIA, TO ACCESS CULTURALLY RESPONSIVE PALLIATIVE CARE
Odette Waanders, Michael Kennedy, Michelle Paterson, Harriet Radermacher, Elena Petreska, Susan Timmins, Annmarie Ferguson. Palliative Care Victoria Inc., Australia 10.1136/bmjspcare-2015-000906.5
Background This project addresses low levels of awareness and use of palliative care among ten culturally and linguistically diverse (CALD) communities in Melbourne, Australia. Aim To increase awareness, understanding and use of palliative care among the Arabic speaking, Chinese, Croatian, Greek, Italian, Macedonian, Maltese, Polish, Turkish and Vietnamese communities in Melbourne and to strengthen the provision of culturally responsive palliative care. Method In July 2013 the palliative care and ethnic peak bodies initiated a two-year project with 10 ethnic communities (5 per year) to deliver peer education sessions about palliative care in community languages. Adjunct activities include community engagement, relationship-building, media, cultural responsiveness education for palliative care services, and evaluation. Results As at mid-July 2014, feedback from 837 participants (80% of 1050 attendees) at 37 community education sessions
A2
for 4 CALD communities indicated that 68% did not know about palliative care before the session. 90% had learnt new information, 90% had an intention to tell friends and family about palliative care and 90% thought palliative care was a good idea. Updated results will be provided. Conclusion Participatory and engagement strategies are needed to improve awareness of palliative care among CALD communities. The formation of community reference groups is a valuable strategy that respects community leadership, expertise and networks. The participation of CALD communities in tailoring education and information to meet specific cultural, spiritual and linguistic needs is essential. The participation of palliative care services in project activities is valued and strengthens relationships of trust and understanding.
OA6
TALKING ABOUT DEATH WON’T KILL YOU; INTRODUCING DIE-ALOGUES
Katherine Kortes-Miller. Hospice Northwest, Canada 10.1136/bmjspcare-2015-000906.6
Background Death holds a significant place in societies despite not being a direct or first-hand experience for many. Fewer people now die in their homes surrounded by family, and we have distanced ourselves from death by geography and the medicalisation of death. Our understanding of dying and death is influenced by the communities we live in. Aim Die-alogues is an initiative hosted by Hospice Northwest intended to support meaningful conversations about dying, death, life and living. The mission of Hospice Northwest is to support end-of-life care in our community. By engaging in open, easy and respectful discussions about death and dying ourselves, we can better prepare ourselves to care for others as they face their own dying and that of those they love. Methods Responding to an identified community need, we have partnered with community organisations including a music and dance studio, a leadership group and a research centre to facilitate this initiative. Our approach has been innovative and included a flash mob, Jeopardy games and various other strategies to facilitate and support community members’ discussions of living until we die. Results Evaluations are positive. Our community has requested more opportunities for Die-alogues to continue. This initiative will hopefully expand in our region including within neighbouring First Nations communities. Conclusion Our standing room only events demonstrate that our community wants to engage and be active participants in learning about dying and death and supporting one another. This presentation/poster will share some of the lessons learned from the Die-alogues community engagement process.
WA7
REFINING AND SHARING OUR METHODS – HOW TO RESEARCH THE PUBLIC HEALTH APPROACH TO PALLIATIVE CARE?
1
Joachim Cohen, 2Libby Sallnow, 3Carol Tishelman. 1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University; 2St Joseph’s Hospice London and the University of Edinburgh, UK; 3Karolinska Institute, Stockholm, Sweden
10.1136/bmjspcare-2015-000906.7
According to the WHO, public health has a mandate to: 1) Assess and monitor the health of communities and populations SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Abstracts to identify health problems and priorities, 2) assure that all populations have access to appropriate and cost– effective care, 3) devise public policies and actions to solve identified local and national health problems and priorities. In line with this, public health has increasingly provided a framework for descriptive and epidemiological palliative care research, related to the first two mandates. Demographic, epidemiological, and sociological changes are increasingly asking for a broader public health approach to palliative care research, one that incorporates the principles of health promotion. This workshop will be led by an international collaborative group interested in how these different mandates relate to one another in developing a public health and palliative care research agenda. The first presentation will focus on the more traditional public health and epidemiological research approach and how it has addressed some public health challenges in palliative care but has missed or ignored others. The second presentation will focus on the New Public Health approach and how this has been translated into research evaluating health promoting palliative care and related interventions, but faces the major challenge of developing an appropriate thorough methodological and evidence base. The presentations will examine the contribution of each tradition and determine how they can inform and strengthen one another. The workshop will conclude with a panel discussion to engage participants to develop a research agenda for the future.
OA8
CARING FOR THE FAMILY CAREGIVER: WORKING WITH VOLUNTEERS TO IMPLEMENT AND IMPROVE A SERVICE TO ENABLE FAMILY CAREGIVERS TO MAINTAIN THEIR OWN WELLBEING
1,2
S Robin Cohen, 1Susan Keats, 1Maria Cherba, 1Dawn Allen, 1,3Christopher J MacKinnon, Vasiliki Bitzas, 4Naomi Kogan, 1,2Jamie L Penner, 1,2Monica Parmar Calislar, 5Anna Feindel, 1,4 Bernard Lapointe, 6Sharon Baxter, 5Suzanne O’Brien, 7Kelli Stajduhar. 1McGill University; 2 Lady Davis Institute for Medical Research, Jewish General Hospital; 3McGill University Health Centre; 4Jewish General Hospital; 5Hope & Cope; 6Canadian Hospice Palliative Care Association; 7University of Victoria 1
10.1136/bmjspcare-2015-000906.8
Background Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. Aim To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers’ roles with the project as both agents of change to the service and as support for the caregivers. Method A qualitative formative evaluation informed by Guba and Lincoln’s Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers’ written reflections. Results Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone’s roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers’ challenges
SPCare 2015;5(Suppl 1):A1–A32
included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). Conclusion Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.
OA9
IMPACT OF MEDICATION SAFETY IN THE PALLIATIVE CARE HOME SETTING – THE CARERS’ PERSPECTIVES ABSTRACT
Caroline Short, Anne Scott. Cessnock Kurri Kurri Singleton Palliative Care, Australia 10.1136/bmjspcare-2015-000906.9
Background A Health Promoting Palliative Care philosophy, Kellehear (1999), was embraced to develop medication safety in the palliative care home setting in response tothe widespread informal practice of carers administering subcutaneous medications, especially in the last few days of life. Evaluations have demonstrated a legal and ethical framework for standardised practices enabling patients choices in place of care and death however a carer survey has been conducted to gain carer’s perspectives. Aim To ascertain how palliative carers feel about participating in administering subcutaneous medications in the home setting during end of life care. Methods Carers who accepted the invitation to participate, were surveyed by telephone 3–6 months post client death. Questions were provided pre-interview – 9 closed and 4 open-ended. Results 100% carers felt they worked in partnership with the team to manage symptoms. 100% believed training and support was easy to understand and inspired confidence. 81% felt they were able to give medications confidently– 19% exercised their right to not participate. Comments demonstrated the support, reassurance, and increased self-worth of the carers developing a great sense of achievement. “Couldn’t have been a happier time for me that he died in bed with his arm around me.....the grandkids were here.... we would all laugh together...” Negative aspects were around bereavement. Conclusion Common themes demonstrated the importance of place of care an d death, pain control, access and timing of information and support, medication safety, exercising Choices, self-confidence, knowing and controlling care of dying and death, and bereavement care. REFERENCE 1
Kellehear A. Health promoting palliative care. Melbourne: Oxford University Press, 1999.
WA10
WORKING IN PARTNERSHIP WITH PEOPLE WITH LEARNING DISABILITIES: ACADEMICS AND PEOPLE WITH LEARNING DISABILITIES WORKING TOGETHER TO DISSEMINATE THE FINDINGS OF A CONFIDENTIAL INQUIRY INTO DEATHS OF PEOPLE WITH LEARNING DISABILITIES THROUGH FILM
Lesley Russ. Bristol City Council, UK 10.1136/bmjspcare-2015-000906.10
Background In England, between 2010–2013, a Confidential Inquiry into premature Deaths of People with Learning Disabilities was commissioned by the Department of Health. This took A3
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
WA7 Refining and sharing our methods − how to research the public health approach to palliative care? Joachim Cohen, Libby Sallnow and Carol Tishelman BMJ Support Palliat Care 2015 5: A2-A3
doi: 10.1136/bmjspcare-2015-000906.7 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A2.4
These include:
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
