Downloaded from http://spcare.bmj.com/ on November 19, 2015 - Published by group.bmj.com
Abstracts place in SW England led by Norah Fry Research Centre at Bristol University. Findings from the investigations into 247 deaths included that men with learning disabilities die, on average 13 years sooner and women, on average 20 years sooner, than the general population. Over 1/3 (37%) were found to be avoidable, being amenable to good quality healthcare. A number of key recommendations were made which required understanding by a range of audiences including people with learning disabilities and their carers. Aim This workshop will demonstrate how academics can work with actors with learning disabilities to disseminate research findings about a sensitive subject in a thought provoking and accessible way. Methods Academics worked with the MISFITs theatre company to make a DVD about the findings and recommendations of the Confidential Inquiry. Results The DVD presents the findings of the Confidential Inquiry through the stories of John, Bill, Karen and Emily. It powerfully illustrates the importance of diagnosing and treating illness of people with learning disabilities in a timely and appropriate manner and highlights the measures that could be taken to reduce premature deaths in this population. Conclusion The session provides an example of how the voices of people with learning disabilities can communicate research messages effectively to people with learning disabilities, health and social care practitioners and others who support the learning disability population.
OA11
PUBLIC HEALTH AND HOSPICES: WHAT IS REALLY POSSIBLE?
Nigel Hartley, Heather Richardson. St Christopher’s Hospice, UK 10.1136/bmjspcare-2015-000906.11
Introduction Whilst a growing number of hospices are proactively engaging in the public health agenda, questions remain about whether this is an approach that hospices can adopt successfully. (Sallnow et al. 2014). The experience of St Christopher’s in the development of its social hub (The Anniversary Centre) offers insights into the challenges and how these are best addressed. Background The Anniversary Centre was established to provide a more open and flexible approach to end of life care and to challenge and change public attitudes towards death and dying. It sought, also, to contest an existing culture of care, shifting from professional management of problems to one in which people take a lead in their own care and wellbeing. Methods A review of the progress of the Centre in achieving these aims has been undertaken five years after its establishment. Questions focus on: . . .
The degree to which the centre has engaged more of the local communities How much its users are able to determine their own priorities, care and wellbeing through attendance at the centre What evidence of a public health approach exists in the support it provides.
Results The Centre offers a new and alternative way of supporting people living with a life threatening condition. Although successes have been achieved, organisational and historical cultural barriers continue to limit progress. Conclusion Hospice culture can prohibit public health approaches to palliative care. However, related innovation is A4
possible when clear values and stories are shared, champions are identified and professional assumptions are challenged. REFERENCE 1.
Sallnow L, Paul S. Understanding community engagement in end-of-life care: developing conceptual clarity. Crit Public Health 2015;25(2):231–8.
OA12
WHEN GRIEF AND WORK COLLIDE
Kathryn Rosenberg. Dorothy House Hospice, UK 10.1136/bmjspcare-2015-000906.12
Background There is a significant price to pay for organisations that fail to take seriously the challenges involved in supporting grieving employees in the workplace, including loss of productivity, sickness absence, and low morale. The purpose of this study was to look at how social service organisations implement their bereavement policies and support bereaved staff. Aim The study aimed to raise awareness of current issues and practices in the implementation of bereavement policies and the management and support of grieving employees on their return to work. Methods A generic qualitative method was used and recruitment of six participants from social service organisations within New Zealand was undertaken. Non-probability purposive sampling was used. Data collection was via email interviews. Results While New Zealand employees are legally entitled to three days paid bereavement leave, how flexible and supportive employers were willing to be beyond that varied. Participants felt out of their depth in dealing with grieving employees and lack of training around grief and loss meant a heavy reliance on external sources of support. The study also exposed a possible lack of understanding in relation to cultural mourning rituals. Conclusion This study uncovered several areas of concern relating to organisational attitudes towards grieving employees and their ability to adequately support bereaved staff on their return to work. It poses the question for future research as to whether organisations can afford not to care and serves as a springboard for examining the detrimental consequences of neglecting the realities of loss.
OA13
DEVELOPING SUSTAINABLE COMMUNITY PARTNERSHIPS TO PROVIDE ONGOING BEREAVEMENT SUPPORT
Jane Groom. Melbourne City Mission Palliative Care, Australia 10.1136/bmjspcare-2015-000906.13
Background This project was developed within an urban homebased palliative care service. It commenced in response to the recognition that acutely grieving people needed long term, broad-based community support, and the need for death education in the community. Aim It was hoped that bereavement support groups could be relocated from a clinical environment to the community, so that bereaved people could access support in their neighbourhoods, develop supportive local connexions and be introduced to a variety of resources. This would result in developing community partnerships, provide death education, assist in normalising death, dying and grief and in redressing the ‘death taboo’ in society. Method Once the concept was approved by the community palliative care service, local community centres were identified,
SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on November 19, 2015 - Published by group.bmj.com
Abstracts connexions made and discussions held regarding building partnerships to provide bereavement support. Two community centres responded enthusiastically and partnerships have slowly developed. Results After 2 years, feedback from bereaved carers has consistently endorsed the move to community centres. Staff at one centre have now offered administrative support, requested ‘open’ grief support groups and grief education sessions. Staff from the other centre have requested a joint memorial service and training in loss and grief for staff. Conclusion Developing sustainable community partnerships takes time and has required Significant evolutional learning. In particular, it must not become dependent on the specific personnel driving the project and there is a need to develop further protocols and ‘embed’ the practice. This is an organic process which will continue to grow in response to further development of the partnership.
Methods To Absent Friends, a People’s Festival of Storytelling and Remembrance was held across Scotland, 1–7 November 2014. Efforts were made to promote the festival, but not to control the form of people’s participation. Results A wide variety of events took place including community-based activities and high profile participation, for example from the Royal Scottish National Orchestra quartet, and the Scottish Rugby Union. Conclusion A public festival in celebration and remembrance of dead loved ones has resonance for many people in Scotland and should grow in future years.
WA16
IF MY BODY IS ILL, WHO AM I? PAIN RELIEF THROUGH EXPRESSION OF WHOLE SELF
Sarah Woolf. Weston Hospicecare, UK 10.1136/bmjspcare-2015-000906.16
OA14
GOOD LIFE, GOOD DEATH, GOOD GRIEF: CHANGING SCOTTISH CULTURE
Mark A Hazelwood, Rebecca M Patterson. Scottish Partnership for Palliative Care, UK 10.1136/bmjspcare-2015-000906.14
Background Social harms are caused in Scotland because of a cultural reluctance to be open about death, dying and bereavement, and there is growing recognition of the importance of promoting culture change relating to these issues. Aim Good Life, Good Death, Good Grief (GLGDGG) was established to make Scotland a place where there is more openness about death, dying and bereavement. Methods Led and supported by the Scottish Partnership for Palliative Care, GLGDGG follows an “assets-based” approachengaging, supporting and enhancing the assets of others. Results GLGDGG has: .
. .
assisted in mobilising the assets of communities (eg through establishing small grants schemes and focal points of activity like To Absent Friends.) influenced policy (eg key messages incorporated within significant publications) found innovative ways of achieving impact on minimal resources (eg Death on the Fringe)
Conclusion A national alliance to encourage and guide activity is helpful in engaging communities and shaping policy.
WA15
TO ABSENT FRIENDS: A PEOPLE’S FESTIVAL OF STORYTELLING AND REMEMBRANCE
Background People rely on mobility and bodily capacity to define who they are. Little has been written about how bodily incapacity towards the end of life affects a person’s self-concept. Expressive Movement Therapy (EMT) (also called Dance Movement Psychotherapy) enables people to use creative movement/ gestures to express themselves physically, emotionally, socially and spiritually. This is the first known research about EMT in palliative care in the UK. Aim To explore clients’ experiences of EMT in a day hospice setting. Methods A phenomenological/case study approach explored four clients’ experiences of EMT in depth. Results Participants used EMT to express how their ill bodies had become obstacles to defining who they are, causing a complex interaction between physical incapacity and emotional, social and spiritual pain. EMT released tension by enabling participants to grieve over these losses of self, and to re-integrate with their estranged bodies to express themselves as “me completely”. Conclusion This research provides a new understanding of the concept of ‘total pain’. It links physical suffering to emotional, social, spiritual pain by showing that bodily incapacity prevents people from expressing their sense of whole self. EMT helps relieve this pain by offering people accessible, creative ways to reconnect with their ill, estranged bodies to express themselves as an integrated complete person. The community needs to adopt a holistic approach, which does not just focus on parts of the body, but recognises the importance of helping people sustain their self-narrative as a whole person in all dimensions of their lives.
Rebecca M Patterson, Mark A Hazelwood. Scottish Partnership for Palliative Care, UK 10.1136/bmjspcare-2015-000906.15
Background Communities play a key role in supporting members through difficult times, yet bereaved individuals often experience social isolation. Palliative care services should make efforts to develop community capacity to support bereaved people. Rituals of remembrance build solidarity. There are indications that many people would like to talk more openly about dead loved ones but are restricted by cultural norms. Aim To create a time of year when remembering dead loved ones is socially accepted and supported within mainstream culture.
SPCare 2015;5(Suppl 1):A1–A32
OA17
COMPASSIONATE COMMUNITIES: ENGAGING WITH COMMUNITIES TO SUPPORT PATIENTS AT END OF LIFE: A BIRMINGHAM ST. MARY’S HOSPICE LIVED EXPERIENCE
Diana Murungu, Tina Swani Sarah Woolf. Birmingham St Mary’s Hospice, UK 10.1136/bmjspcare-2015-000906.17
Background Researchers carrying out a rebranding exercise for us in 2006 found that people from Black Asian and other Minority Ethnic (BAME) communities did not respond to their survey. This appeared to support anecdotal evidence from staff
A5
Downloaded from http://spcare.bmj.com/ on November 19, 2015 - Published by group.bmj.com
OA13 Developing sustainable community partnerships to provide ongoing bereavement support Jane Groom BMJ Support Palliat Care 2015 5: A4-A5
doi: 10.1136/bmjspcare-2015-000906.13 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A4.3
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 place in SW England led by Norah Fry Research Centre at Bristol University. Findings from the investigations into 247 deaths included that men with learning disabilities die, on average 13 years sooner and women, on average 20 years sooner, than the general population. Over 1/3 (37%) were found to be avoidable, being amenable to good quality healthcare. A number of key recommendations were made which required understanding by a range of audiences including people with learning disabilities and their carers. Aim This workshop will demonstrate how academics can work with actors with learning disabilities to disseminate research findings about a sensitive subject in a thought provoking and accessible way. Methods Academics worked with the MISFITs theatre company to make a DVD about the findings and recommendations of the Confidential Inquiry. Results The DVD presents the findings of the Confidential Inquiry through the stories of John, Bill, Karen and Emily. It powerfully illustrates the importance of diagnosing and treating illness of people with learning disabilities in a timely and appropriate manner and highlights the measures that could be taken to reduce premature deaths in this population. Conclusion The session provides an example of how the voices of people with learning disabilities can communicate research messages effectively to people with learning disabilities, health and social care practitioners and others who support the learning disability population.
OA11
PUBLIC HEALTH AND HOSPICES: WHAT IS REALLY POSSIBLE?
Nigel Hartley, Heather Richardson. St Christopher’s Hospice, UK 10.1136/bmjspcare-2015-000906.11
Introduction Whilst a growing number of hospices are proactively engaging in the public health agenda, questions remain about whether this is an approach that hospices can adopt successfully. (Sallnow et al. 2014). The experience of St Christopher’s in the development of its social hub (The Anniversary Centre) offers insights into the challenges and how these are best addressed. Background The Anniversary Centre was established to provide a more open and flexible approach to end of life care and to challenge and change public attitudes towards death and dying. It sought, also, to contest an existing culture of care, shifting from professional management of problems to one in which people take a lead in their own care and wellbeing. Methods A review of the progress of the Centre in achieving these aims has been undertaken five years after its establishment. Questions focus on: . . .
The degree to which the centre has engaged more of the local communities How much its users are able to determine their own priorities, care and wellbeing through attendance at the centre What evidence of a public health approach exists in the support it provides.
Results The Centre offers a new and alternative way of supporting people living with a life threatening condition. Although successes have been achieved, organisational and historical cultural barriers continue to limit progress. Conclusion Hospice culture can prohibit public health approaches to palliative care. However, related innovation is A4
possible when clear values and stories are shared, champions are identified and professional assumptions are challenged. REFERENCE 1.
Sallnow L, Paul S. Understanding community engagement in end-of-life care: developing conceptual clarity. Crit Public Health 2015;25(2):231–8.
OA12
WHEN GRIEF AND WORK COLLIDE
Kathryn Rosenberg. Dorothy House Hospice, UK 10.1136/bmjspcare-2015-000906.12
Background There is a significant price to pay for organisations that fail to take seriously the challenges involved in supporting grieving employees in the workplace, including loss of productivity, sickness absence, and low morale. The purpose of this study was to look at how social service organisations implement their bereavement policies and support bereaved staff. Aim The study aimed to raise awareness of current issues and practices in the implementation of bereavement policies and the management and support of grieving employees on their return to work. Methods A generic qualitative method was used and recruitment of six participants from social service organisations within New Zealand was undertaken. Non-probability purposive sampling was used. Data collection was via email interviews. Results While New Zealand employees are legally entitled to three days paid bereavement leave, how flexible and supportive employers were willing to be beyond that varied. Participants felt out of their depth in dealing with grieving employees and lack of training around grief and loss meant a heavy reliance on external sources of support. The study also exposed a possible lack of understanding in relation to cultural mourning rituals. Conclusion This study uncovered several areas of concern relating to organisational attitudes towards grieving employees and their ability to adequately support bereaved staff on their return to work. It poses the question for future research as to whether organisations can afford not to care and serves as a springboard for examining the detrimental consequences of neglecting the realities of loss.
OA13
DEVELOPING SUSTAINABLE COMMUNITY PARTNERSHIPS TO PROVIDE ONGOING BEREAVEMENT SUPPORT
Jane Groom. Melbourne City Mission Palliative Care, Australia 10.1136/bmjspcare-2015-000906.13
Background This project was developed within an urban homebased palliative care service. It commenced in response to the recognition that acutely grieving people needed long term, broad-based community support, and the need for death education in the community. Aim It was hoped that bereavement support groups could be relocated from a clinical environment to the community, so that bereaved people could access support in their neighbourhoods, develop supportive local connexions and be introduced to a variety of resources. This would result in developing community partnerships, provide death education, assist in normalising death, dying and grief and in redressing the ‘death taboo’ in society. Method Once the concept was approved by the community palliative care service, local community centres were identified,
SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on November 19, 2015 - Published by group.bmj.com
Abstracts connexions made and discussions held regarding building partnerships to provide bereavement support. Two community centres responded enthusiastically and partnerships have slowly developed. Results After 2 years, feedback from bereaved carers has consistently endorsed the move to community centres. Staff at one centre have now offered administrative support, requested ‘open’ grief support groups and grief education sessions. Staff from the other centre have requested a joint memorial service and training in loss and grief for staff. Conclusion Developing sustainable community partnerships takes time and has required Significant evolutional learning. In particular, it must not become dependent on the specific personnel driving the project and there is a need to develop further protocols and ‘embed’ the practice. This is an organic process which will continue to grow in response to further development of the partnership.
Methods To Absent Friends, a People’s Festival of Storytelling and Remembrance was held across Scotland, 1–7 November 2014. Efforts were made to promote the festival, but not to control the form of people’s participation. Results A wide variety of events took place including community-based activities and high profile participation, for example from the Royal Scottish National Orchestra quartet, and the Scottish Rugby Union. Conclusion A public festival in celebration and remembrance of dead loved ones has resonance for many people in Scotland and should grow in future years.
WA16
IF MY BODY IS ILL, WHO AM I? PAIN RELIEF THROUGH EXPRESSION OF WHOLE SELF
Sarah Woolf. Weston Hospicecare, UK 10.1136/bmjspcare-2015-000906.16
OA14
GOOD LIFE, GOOD DEATH, GOOD GRIEF: CHANGING SCOTTISH CULTURE
Mark A Hazelwood, Rebecca M Patterson. Scottish Partnership for Palliative Care, UK 10.1136/bmjspcare-2015-000906.14
Background Social harms are caused in Scotland because of a cultural reluctance to be open about death, dying and bereavement, and there is growing recognition of the importance of promoting culture change relating to these issues. Aim Good Life, Good Death, Good Grief (GLGDGG) was established to make Scotland a place where there is more openness about death, dying and bereavement. Methods Led and supported by the Scottish Partnership for Palliative Care, GLGDGG follows an “assets-based” approachengaging, supporting and enhancing the assets of others. Results GLGDGG has: .
. .
assisted in mobilising the assets of communities (eg through establishing small grants schemes and focal points of activity like To Absent Friends.) influenced policy (eg key messages incorporated within significant publications) found innovative ways of achieving impact on minimal resources (eg Death on the Fringe)
Conclusion A national alliance to encourage and guide activity is helpful in engaging communities and shaping policy.
WA15
TO ABSENT FRIENDS: A PEOPLE’S FESTIVAL OF STORYTELLING AND REMEMBRANCE
Background People rely on mobility and bodily capacity to define who they are. Little has been written about how bodily incapacity towards the end of life affects a person’s self-concept. Expressive Movement Therapy (EMT) (also called Dance Movement Psychotherapy) enables people to use creative movement/ gestures to express themselves physically, emotionally, socially and spiritually. This is the first known research about EMT in palliative care in the UK. Aim To explore clients’ experiences of EMT in a day hospice setting. Methods A phenomenological/case study approach explored four clients’ experiences of EMT in depth. Results Participants used EMT to express how their ill bodies had become obstacles to defining who they are, causing a complex interaction between physical incapacity and emotional, social and spiritual pain. EMT released tension by enabling participants to grieve over these losses of self, and to re-integrate with their estranged bodies to express themselves as “me completely”. Conclusion This research provides a new understanding of the concept of ‘total pain’. It links physical suffering to emotional, social, spiritual pain by showing that bodily incapacity prevents people from expressing their sense of whole self. EMT helps relieve this pain by offering people accessible, creative ways to reconnect with their ill, estranged bodies to express themselves as an integrated complete person. The community needs to adopt a holistic approach, which does not just focus on parts of the body, but recognises the importance of helping people sustain their self-narrative as a whole person in all dimensions of their lives.
Rebecca M Patterson, Mark A Hazelwood. Scottish Partnership for Palliative Care, UK 10.1136/bmjspcare-2015-000906.15
Background Communities play a key role in supporting members through difficult times, yet bereaved individuals often experience social isolation. Palliative care services should make efforts to develop community capacity to support bereaved people. Rituals of remembrance build solidarity. There are indications that many people would like to talk more openly about dead loved ones but are restricted by cultural norms. Aim To create a time of year when remembering dead loved ones is socially accepted and supported within mainstream culture.
SPCare 2015;5(Suppl 1):A1–A32
OA17
COMPASSIONATE COMMUNITIES: ENGAGING WITH COMMUNITIES TO SUPPORT PATIENTS AT END OF LIFE: A BIRMINGHAM ST. MARY’S HOSPICE LIVED EXPERIENCE
Diana Murungu, Tina Swani Sarah Woolf. Birmingham St Mary’s Hospice, UK 10.1136/bmjspcare-2015-000906.17
Background Researchers carrying out a rebranding exercise for us in 2006 found that people from Black Asian and other Minority Ethnic (BAME) communities did not respond to their survey. This appeared to support anecdotal evidence from staff
A5
Downloaded from http://spcare.bmj.com/ on November 19, 2015 - Published by group.bmj.com
OA13 Developing sustainable community partnerships to provide ongoing bereavement support Jane Groom BMJ Support Palliat Care 2015 5: A4-A5
doi: 10.1136/bmjspcare-2015-000906.13 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A4.3
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/
