Downloaded from http://spcare.bmj.com/ on November 24, 2015 - Published by group.bmj.com
Abstracts Results A core category of fear, helplessness and fatalism emerged from the data. Family history was the most salient cancer risk factor and a diagnosis of advanced cancer increased perceptions of vulnerability for first-degree relatives. For relatives, the uncertainty and chaotic loss of control that accompanied an advanced cancer diagnosis resulted in multiple levels of fear and intensely negative or fatalistic attitudes to cancer. In contrast, patients held less negative views of cancer. They described several means of regaining control, including the importance of leaving a legacy – the hope that their situation would have a positive impact on others in the future. Conclusion Despite the prominence of ‘prevention’ in definitions of palliative care, services have evolved that are largely professional led and reactive. Adopting a health promoting approach based on empowerment is important, not just for improving care, but also increasing perceptions of control that may reduce negative cancer beliefs.
PA15
BEER MAT CHAT
Mark A Hazelwood, Rebecca M Patterson. Scottish Partnership for Palliative Care, UK 10.1136/bmjspcare-2015-000906.75
Background Storytelling/remembrance can the reduce isolation of recently (and less recently) bereaved people, and are beneficial to participants. Traditional rituals and approaches which supported storytelling/remembrance are declining in Scotland. Pubs are hubs of social interaction and storytelling, especially for men. Aim To explore the acceptability of beer mats in pubs as a prompt to storytelling and remembrance of people who have died, and to promote To Absent Friends, a peoples’ festival of storytelling and remembrance. Methods 5 mats were designed – each had a carefully selected quotation or piece of trivia relating to loss or remembrance, plus a web link to www.toabsentfriends.org.uk. 20,000 mats were made available to order. Feedback regarding acceptability was elicited through conversation with bar tenders, direct observation and a questionnaire dispatched with some orders. A press release was issued. Results The mats were generally viewed as being acceptable. A local brewer distributed Approximately 15,000 mats to pubs across Edinburgh. The main Edinburgh newspaper ran a prominent article about the mats, the To Absent Friends Festival and the value of greater openness about death and dying. Conclusion Beer mats are an acceptable way of introducing reflection on loss, grief and mortality into pubs. More research is needed to establish the effectiveness of the mats in prompting storytelling and remembrance.
PA16
CARER PROOFING: EMPOWERING FAMILY CARERS TO DESIGN AN ONLINE TOOL TO MEET THEIR INFORMATION NEEDS
Diamaid O’Sullivan, Paul O’Mahoney. The Carers Association, Ireland 10.1136/bmjspcare-2015-000906.76
Background Among the general public there are misconceptions, sensitivities and taboos relating to Palliative Care. Furthermore, many Palliative Care recipients and Family Carers are managing with little guidance, knowledge or training. A24
Aim The All Island Institute for Hospice and Palliative Care (AIIHPC) funded this research to identify and evaluate community learning needs in the context of Palliative Care and propose key components of an electronic learning package and supporting materials for local communities on the island of Ireland. Methods This research emulated a participant action research model which was developed to create an empowerment intervention for older people to protect themselves against financial abuse.1 The model is guided by principles of authentic participation and collaboration; namely through interviews and focus groups with care recipients and Family Carers with experience of Palliative Care as well as with relevant health care professionals. The research also assembled a working group of Family Carers. Results The working group of Family Carers was supported and empowered to reflect on their personal experience, on the insight from Health Care Professionals and on creative methods of information delivery. The Working Group made specific recommendations about the content of an online learning package and the delivery mechanisms that would best meet the information needs of those new to Palliative Care. Conclusion Placing Family Carers at the centre of the research process resulted in pragmatic recommendations and should result in the design of an effective online information tool. REFERENCE 1
The O’Donnell Empowerment Model, NCPOP, UCD http://www.ncpop.ie/ WEAAD_2013_Presentations
PA17
INTERVENTIONS TO IMPROVE UPSTREAM COMMUNICATION ABOUT DEATH AND DYING
Katharine Abba, Siobhan Horton, Rachel Zammit, Mari Lloyd-Williams. Academic Palliative and Supportive Care Studies Group (APSCSG) University of Liverpool, UK 10.1136/bmjspcare-2015-000906.77
Background Death is universal. Only 37% of adults have a will and 48% have stated their wishes regarding cremation or burial.1 Planning and communication can help prevent some of the distress associated with dying and bereavement. Aim To evaluate an intervention to encourage people to plan for the end of their life and to communicate their wishes to those closest to them. Method Two interventions were delivered via community groups: . .
‘Awareness’ presentations aimed to raise awareness of benefits of preparing and talking about end of life issues. ‘How to’ workshops aimed to give people confidence and tools to open relevant conversations. To evaluate their impact, we conducted a 3-stage questionnaire survey; administered before, immediate after and 3 months after events.
Results At baseline (n = 498; 76% female) 76% had previously discussed end of life care or wishes after death. Most were comfortable talking about these subjects, giving a mean score of 8.28/10. At follow-up (n = 133); 60% indicated they had made changes following the event; 43% had talked about their own end of life wishes, 9% for the first time; and 39% reported making other changes. The change in the proportion of people who had ever talked about their own end of life wishes was statistically significant (p = 0.033). Conclusion Well designed community events can improve planning and communication of end of life preferences among general population. SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on November 24, 2015 - Published by group.bmj.com
PA16 Carer proofing: empowering family carers to design an online tool to meet their information needs Diamaid O'Sullivan and Paul O'Mahoney BMJ Support Palliat Care 2015 5: A24
doi: 10.1136/bmjspcare-2015-000906.76 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A24.2
These include:
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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 Results A core category of fear, helplessness and fatalism emerged from the data. Family history was the most salient cancer risk factor and a diagnosis of advanced cancer increased perceptions of vulnerability for first-degree relatives. For relatives, the uncertainty and chaotic loss of control that accompanied an advanced cancer diagnosis resulted in multiple levels of fear and intensely negative or fatalistic attitudes to cancer. In contrast, patients held less negative views of cancer. They described several means of regaining control, including the importance of leaving a legacy – the hope that their situation would have a positive impact on others in the future. Conclusion Despite the prominence of ‘prevention’ in definitions of palliative care, services have evolved that are largely professional led and reactive. Adopting a health promoting approach based on empowerment is important, not just for improving care, but also increasing perceptions of control that may reduce negative cancer beliefs.
PA15
BEER MAT CHAT
Mark A Hazelwood, Rebecca M Patterson. Scottish Partnership for Palliative Care, UK 10.1136/bmjspcare-2015-000906.75
Background Storytelling/remembrance can the reduce isolation of recently (and less recently) bereaved people, and are beneficial to participants. Traditional rituals and approaches which supported storytelling/remembrance are declining in Scotland. Pubs are hubs of social interaction and storytelling, especially for men. Aim To explore the acceptability of beer mats in pubs as a prompt to storytelling and remembrance of people who have died, and to promote To Absent Friends, a peoples’ festival of storytelling and remembrance. Methods 5 mats were designed – each had a carefully selected quotation or piece of trivia relating to loss or remembrance, plus a web link to www.toabsentfriends.org.uk. 20,000 mats were made available to order. Feedback regarding acceptability was elicited through conversation with bar tenders, direct observation and a questionnaire dispatched with some orders. A press release was issued. Results The mats were generally viewed as being acceptable. A local brewer distributed Approximately 15,000 mats to pubs across Edinburgh. The main Edinburgh newspaper ran a prominent article about the mats, the To Absent Friends Festival and the value of greater openness about death and dying. Conclusion Beer mats are an acceptable way of introducing reflection on loss, grief and mortality into pubs. More research is needed to establish the effectiveness of the mats in prompting storytelling and remembrance.
PA16
CARER PROOFING: EMPOWERING FAMILY CARERS TO DESIGN AN ONLINE TOOL TO MEET THEIR INFORMATION NEEDS
Diamaid O’Sullivan, Paul O’Mahoney. The Carers Association, Ireland 10.1136/bmjspcare-2015-000906.76
Background Among the general public there are misconceptions, sensitivities and taboos relating to Palliative Care. Furthermore, many Palliative Care recipients and Family Carers are managing with little guidance, knowledge or training. A24
Aim The All Island Institute for Hospice and Palliative Care (AIIHPC) funded this research to identify and evaluate community learning needs in the context of Palliative Care and propose key components of an electronic learning package and supporting materials for local communities on the island of Ireland. Methods This research emulated a participant action research model which was developed to create an empowerment intervention for older people to protect themselves against financial abuse.1 The model is guided by principles of authentic participation and collaboration; namely through interviews and focus groups with care recipients and Family Carers with experience of Palliative Care as well as with relevant health care professionals. The research also assembled a working group of Family Carers. Results The working group of Family Carers was supported and empowered to reflect on their personal experience, on the insight from Health Care Professionals and on creative methods of information delivery. The Working Group made specific recommendations about the content of an online learning package and the delivery mechanisms that would best meet the information needs of those new to Palliative Care. Conclusion Placing Family Carers at the centre of the research process resulted in pragmatic recommendations and should result in the design of an effective online information tool. REFERENCE 1
The O’Donnell Empowerment Model, NCPOP, UCD http://www.ncpop.ie/ WEAAD_2013_Presentations
PA17
INTERVENTIONS TO IMPROVE UPSTREAM COMMUNICATION ABOUT DEATH AND DYING
Katharine Abba, Siobhan Horton, Rachel Zammit, Mari Lloyd-Williams. Academic Palliative and Supportive Care Studies Group (APSCSG) University of Liverpool, UK 10.1136/bmjspcare-2015-000906.77
Background Death is universal. Only 37% of adults have a will and 48% have stated their wishes regarding cremation or burial.1 Planning and communication can help prevent some of the distress associated with dying and bereavement. Aim To evaluate an intervention to encourage people to plan for the end of their life and to communicate their wishes to those closest to them. Method Two interventions were delivered via community groups: . .
‘Awareness’ presentations aimed to raise awareness of benefits of preparing and talking about end of life issues. ‘How to’ workshops aimed to give people confidence and tools to open relevant conversations. To evaluate their impact, we conducted a 3-stage questionnaire survey; administered before, immediate after and 3 months after events.
Results At baseline (n = 498; 76% female) 76% had previously discussed end of life care or wishes after death. Most were comfortable talking about these subjects, giving a mean score of 8.28/10. At follow-up (n = 133); 60% indicated they had made changes following the event; 43% had talked about their own end of life wishes, 9% for the first time; and 39% reported making other changes. The change in the proportion of people who had ever talked about their own end of life wishes was statistically significant (p = 0.033). Conclusion Well designed community events can improve planning and communication of end of life preferences among general population. SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on November 24, 2015 - Published by group.bmj.com
PA16 Carer proofing: empowering family carers to design an online tool to meet their information needs Diamaid O'Sullivan and Paul O'Mahoney BMJ Support Palliat Care 2015 5: A24
doi: 10.1136/bmjspcare-2015-000906.76 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A24.2
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/
