Downloaded from http://spcare.bmj.com/ on October 19, 2017 - Published by group.bmj.com
Abstracts Aim 1) Outline the profile of all cancer patients admitted to the hospitals of the Unified Health System (SUS) between 2008–2013; 2) Estimate the number of cancer patients with palliative care needs in the population. Method The present methodology has a quantitative approach, with descriptive exploratory, retrospective and observational studies of hospitalised cancer patients. Data was collected from the hospital information system of the Unified Health System (SIH/SUS), obtained from the database of the Health Information Department of SUS (DATASUS). Results Between 2008 and 2013, there were almost 4 million hospitalizations (3,705, 024) of patients with cancer in Brazil. From this total 2,661,118 (71.8%) had malignant cancer and 286,566 (7.73%) resulted in hospital death. Conclusion Estimating resources and specific parameters to structure and tailor palliative care assistance in countries whose health policies do not provide this mode, as the case of Brazil, has been a difficult task, considering the existing diversities between curative and palliative assistance and understanding regarding the combination of different types and criteria of care.
PA28
ASSESSING PHYSICIANS’ PERCEPTION OF HOME BASED PALLIATIVE CARE SERVICES IN THE BEIRUT AREA
Background ‘Birth’ was reclaimed through the natural child birth movement in the 1970s and went on to inspire the origins of the natural death movement in the UK. The Natural Death Centre charity was launched in 1991 to reclaim death. However with any people’s movement it responded to demand from the public into funerals. Until the last decade the funeral industry was a closed shop and the natural death movement has led consumer driven demand for change. The conference presentation will apply academic scrutiny to the history of the movement. Aim As an anarchist movement the aims of the Natural Death Centre are fluid and ever evolving. Method The conference presentation involves identifying key milestones in the natural death movement and the influences for change. Audio interviews with key leaders in the UK natural death movement will be transcribed and a content analysis will draw themes applied to the four concepts of a public health approach to palliative care. Results The results will allow an academic scrutiny to the UK natural death movement to act as a catalyst for change and creating new visions to share with the wider public health approach to palliative care community. Conclusion The natural death movement is embracing and evolved away from traditional structures of health and palliative care. It complements more traditional methods for change.
Hibah Osman, Jinane Abi Ramia. Lebanese Centre for Palliative Care-Balsam, Lebanon 10.1136/bmjspcare-2015-000906.88
Background The referral process in palliative care is influenced by the structure of the health care system and the understanding of the value of Palliative Care (PC) by healthcare practitioners and patients. Balsam-Lebanese Centre for Palliative Care is a non-governmental organisation that has been providing home-based palliative care services to patients in Greater Beirut since 2010. Lebanon has a highly privatised fee-for-service health care system. In this setting, treating physicians may resist seeking palliative care services for their patients for fear of losing the patient. A lack of awareness regarding the added value of palliative care can also be detrimental to referral rates. We aimed to gain physician acceptance by providing high quality care, consistent communication, and education. Aim To assess the perceptions of referring physicians towards our home-based palliative care service. Methods A sample of primary physicians whose patients have been under the care of Balsam will be interviewed to assess their perceptions of the quality and value of our service to their patients as well as the impact of the service on their practice. 10–15 semi-structured interviews will be conducted transcribed and analysed thematically. Results Since the initiation of our in 2010, patient load has steadily increased. The pool of referring physicians has also increased from 3 physicians in the first year to 58 physicians to date in 2014. In this study, we will share the findings from our qualitative study with referring physicians. Conclusion Understanding the fears and concerns of referring physicians will guide further interventions and may improve referral rates.
PA29
HOW HAS THE NATURAL DEATH MOVEMENT HAS BEEN LIFTINIG THE LID ON DYING AND FUNERALS FOR 25 YEARS?
Susan Morris, Rosie Inman-Cook. The Natural Death Centre Charity, UK 10.1136/bmjspcare-2015-000906.89
A28
PA30
WHY SPECIALIST COMMUNITY PUBLIC HEALTH NURSES SHOULD WORK IN END OF LIFE CARE
Sandy Knowles. St Luke’s Hospice-Plymouth, UK 10.1136/bmjspcare-2015-000906.90
Background Overview of roots of public health nursing in UK. Specialist Community Public Health Nurses, formerly known as Health Visitors, have been responding to key health priorities in the United Kingdom for the past 150 years. The profession emerged in response to the appalling poverty and high infant mortality rates which characterised nineteenth century Victorian slums, and transformed itself in the twentieth century to provide family welfare “from the cradle to the grave”, including social and mental health. Acheson’s 1998 definition of public health as “the organised application of resources to achieve the greatest health for the greatest number”, dominated practice and preceded The New NHS: Modern and Dependable (1997) which put public health at the top of the agenda. The new approach meant crossing traditional boundaries and putting the ‘community’ at the centre of healthcare through empowerment. Throughout these changes, the underpinning principles have remained the same, including the search for health needs, stimulation of awareness of health needs, influence on policies affecting health and facilitation of health-enhancing activities. Aim To learn from other public health professionals. Method Literature review. Specialist Community Public Health Nurses with an interest and experience in end of life care, can apply these same principles to the new public health approach to death and dying, searching for death and dying needs whilst stimulating an awareness. This would lead to exerting influence on policies affecting death and dying and facilitating healthenhancing activities. The public health approach is new to palliative and end of life care so it makes sense to learn from those professionals who have a long history of successfully responding, adapting to change, rising to contemporary challenges and harnessing opportunities.
SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on October 19, 2017 - Published by group.bmj.com
Abstracts Results Understanding of how and when the public health agenda emerged. Conclusion Other professionals have skills we need.
PA31
BRIDGING THE GAP: STRENGTHENING RELATIONS BETWEEN FAITH AND HOSPICE. A RESEARCH PROJECT COMMISSIONED BY HOSPICE UK AND TOGETHER FOR SHORT LIVES
Sughra Ahmed. Woolf Institute, UK 10.1136/bmjspcare-2015-000906.91
Background In an age where communities are becoming increasingly diverse how are Muslim communities (the second largest faith group in the UK) impacted by a lack of engagement with hospice care? How are hospices trying to meet the needs of British Muslim patients (and their relatives) who are coming towards the end of life? Statistics and reports evidence an ageing British Muslim population who will increasingly require the support and services of hospice care. This project will go some way in enabling a strong working relationship in order that Muslims can be confident, comfortable and capable of getting in touch with their local hospice and access crucial services such as adult/ children’s hospice care. It is also important that hospices are prepared to work with British Muslims holistically using a personcentred approach, and are equipped to do so. The building of these connexions will help to create a dynamic relationship between Muslims and hospices working towards a match between the needs of Muslim communities and the services offered by hospices. Aim This project, combining both research and practice, will provide both a theoretical and practical understanding of where the challenges and opportunities lie in building a strong and vibrant relationship between hospices and British Muslim in East London. Methods . . . .
A range of in depth interviews with hospice staff and community individuals/institutions Attending meetings/conferences where hospice care and diversity is explored Host Roundtable with palliative care and faith community experts Extracting, analysing and including feedback from the Community outreach events in London and Manchester
Results Research in progress, to be continued April 2015. Conclusion TBC.
PA32
FAMILY CENTRED HEALTH CARE: A PALLIATIVE CARE APPROACH TO ENGAGE COMMUNITIES TO ADDRESS THE BURDEN OF HIV IN TANZANIA ABSTRACT
1
Manase Frank, 2Diwani Msemo, 3Elias Muganyizi, 4Paulo Mbando, 5Alick Kayange. 1The Community Center for Preventive Medicine; 2Ocean Road Cancer Institute; 3Tanzania Palliative Care Association; 4Evangelical Lutheran Church of Tanzania; 5PASADA
10.1136/bmjspcare-2015-000906.92
Background Tanzania is one of the countries most devastated by HIV and AIDS in the sub Saharan Africa. The Government of Tanzania has called for a community participation to address the burden of HIV in Tanzania1 however the uptake of this call has
SPCare 2015;5(Suppl 1):A1–A32
been minimal. This paper intends to describe the role of Palliative Medicine in engaging communities to address burden of HIV in Tanzania. Aim We aim to improve health outcomes of HIV+ children by engaging families through utilisation of palliative care principles in a low resource setting Method Single child with recurrent illness, multiple social spiritual and psychological problems was purposely selected from a pool of HIV+ children attending a PASADA HIV clinic and was offered care through palliative care approach. An interdisciplinary team of health providers was formed, goals of care were identified and care plan developed. Family members empowered with knowledge and skills to live with a HIV+ child and assigned specific role to ensure the boy’s physical, psychological and spiritual needs are met. Through retrospective chart review, clinical meetings, counselling sessions with the child, family and providers information was gathered to enrich our understanding of the process. Results Goals of care were met: cleared infections, tested for HIV, resumed school, and family unified. Hundreds of children benefited from the experience generated and expansion of the approach was governed by community engagement. Conclusion Families when empowered have much potentials that can reverse sufferings due to diseases through application of Palliative Care Principles in practice. REFERENCE 1
Tanzania Commission for AIDS. 2008 Annual Report
PA33
REFLECTIONS FROM THE INTERSECTION OF PALLIATIVE CARE AND DESIGN
Helena Kjellgren, Max Kleijberg, Ida Carlander, Olav Lindqvist, Carol Tishelman. LIME, MMC/Innovative Care at the Karolinska Institute, Sweden 10.1136/bmjspcare-2015-000906.93
This presentation is based on our reflections as two designers entering palliative care, one working with supportive environments for death and dying and one working with issues related to health-promoting palliative care. Death, dying and mourning are important universal conditions that raise existential thought and reflection. The focus of care is different here than in most other areas, as it is not about curing, and values go beyond medical perspectives. Thus, if we want to support meaningful experiences related to dying, it is necessary to look beyond institutional structures and disciplinary divisions. The practice of design has begun to move away from a primary concern with the commercial realm, to instead be used as a method to approach complexity to incrementally improve situations. A key aspect of this is to design with those concerned rather than for them. We argue that design related to contextual change requires an immersion within that context. An essential feature of design is making, and so, drawing on this disciplinary background, we iteratively try theories out, working towards minimising the gap between theory and practice. This approach, applied in a sensitive setting, has the potential to result in insights relevant in the particular situation, as well as offering transferable design methods. Convinced that the intersection of design and palliative care offers opportunities for both sectors, we will present concrete examples from our interdisciplinary research group, to talk about the opportunities and challenges of our work.
A29
Downloaded from http://spcare.bmj.com/ on October 19, 2017 - Published by group.bmj.com
PA30 Why specialist community public health nurses should work in end of life care Sandy Knowles BMJ Support Palliat Care 2015 5: A28-A29
doi: 10.1136/bmjspcare-2015-000906.90 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A28.3
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 Aim 1) Outline the profile of all cancer patients admitted to the hospitals of the Unified Health System (SUS) between 2008–2013; 2) Estimate the number of cancer patients with palliative care needs in the population. Method The present methodology has a quantitative approach, with descriptive exploratory, retrospective and observational studies of hospitalised cancer patients. Data was collected from the hospital information system of the Unified Health System (SIH/SUS), obtained from the database of the Health Information Department of SUS (DATASUS). Results Between 2008 and 2013, there were almost 4 million hospitalizations (3,705, 024) of patients with cancer in Brazil. From this total 2,661,118 (71.8%) had malignant cancer and 286,566 (7.73%) resulted in hospital death. Conclusion Estimating resources and specific parameters to structure and tailor palliative care assistance in countries whose health policies do not provide this mode, as the case of Brazil, has been a difficult task, considering the existing diversities between curative and palliative assistance and understanding regarding the combination of different types and criteria of care.
PA28
ASSESSING PHYSICIANS’ PERCEPTION OF HOME BASED PALLIATIVE CARE SERVICES IN THE BEIRUT AREA
Background ‘Birth’ was reclaimed through the natural child birth movement in the 1970s and went on to inspire the origins of the natural death movement in the UK. The Natural Death Centre charity was launched in 1991 to reclaim death. However with any people’s movement it responded to demand from the public into funerals. Until the last decade the funeral industry was a closed shop and the natural death movement has led consumer driven demand for change. The conference presentation will apply academic scrutiny to the history of the movement. Aim As an anarchist movement the aims of the Natural Death Centre are fluid and ever evolving. Method The conference presentation involves identifying key milestones in the natural death movement and the influences for change. Audio interviews with key leaders in the UK natural death movement will be transcribed and a content analysis will draw themes applied to the four concepts of a public health approach to palliative care. Results The results will allow an academic scrutiny to the UK natural death movement to act as a catalyst for change and creating new visions to share with the wider public health approach to palliative care community. Conclusion The natural death movement is embracing and evolved away from traditional structures of health and palliative care. It complements more traditional methods for change.
Hibah Osman, Jinane Abi Ramia. Lebanese Centre for Palliative Care-Balsam, Lebanon 10.1136/bmjspcare-2015-000906.88
Background The referral process in palliative care is influenced by the structure of the health care system and the understanding of the value of Palliative Care (PC) by healthcare practitioners and patients. Balsam-Lebanese Centre for Palliative Care is a non-governmental organisation that has been providing home-based palliative care services to patients in Greater Beirut since 2010. Lebanon has a highly privatised fee-for-service health care system. In this setting, treating physicians may resist seeking palliative care services for their patients for fear of losing the patient. A lack of awareness regarding the added value of palliative care can also be detrimental to referral rates. We aimed to gain physician acceptance by providing high quality care, consistent communication, and education. Aim To assess the perceptions of referring physicians towards our home-based palliative care service. Methods A sample of primary physicians whose patients have been under the care of Balsam will be interviewed to assess their perceptions of the quality and value of our service to their patients as well as the impact of the service on their practice. 10–15 semi-structured interviews will be conducted transcribed and analysed thematically. Results Since the initiation of our in 2010, patient load has steadily increased. The pool of referring physicians has also increased from 3 physicians in the first year to 58 physicians to date in 2014. In this study, we will share the findings from our qualitative study with referring physicians. Conclusion Understanding the fears and concerns of referring physicians will guide further interventions and may improve referral rates.
PA29
HOW HAS THE NATURAL DEATH MOVEMENT HAS BEEN LIFTINIG THE LID ON DYING AND FUNERALS FOR 25 YEARS?
Susan Morris, Rosie Inman-Cook. The Natural Death Centre Charity, UK 10.1136/bmjspcare-2015-000906.89
A28
PA30
WHY SPECIALIST COMMUNITY PUBLIC HEALTH NURSES SHOULD WORK IN END OF LIFE CARE
Sandy Knowles. St Luke’s Hospice-Plymouth, UK 10.1136/bmjspcare-2015-000906.90
Background Overview of roots of public health nursing in UK. Specialist Community Public Health Nurses, formerly known as Health Visitors, have been responding to key health priorities in the United Kingdom for the past 150 years. The profession emerged in response to the appalling poverty and high infant mortality rates which characterised nineteenth century Victorian slums, and transformed itself in the twentieth century to provide family welfare “from the cradle to the grave”, including social and mental health. Acheson’s 1998 definition of public health as “the organised application of resources to achieve the greatest health for the greatest number”, dominated practice and preceded The New NHS: Modern and Dependable (1997) which put public health at the top of the agenda. The new approach meant crossing traditional boundaries and putting the ‘community’ at the centre of healthcare through empowerment. Throughout these changes, the underpinning principles have remained the same, including the search for health needs, stimulation of awareness of health needs, influence on policies affecting health and facilitation of health-enhancing activities. Aim To learn from other public health professionals. Method Literature review. Specialist Community Public Health Nurses with an interest and experience in end of life care, can apply these same principles to the new public health approach to death and dying, searching for death and dying needs whilst stimulating an awareness. This would lead to exerting influence on policies affecting death and dying and facilitating healthenhancing activities. The public health approach is new to palliative and end of life care so it makes sense to learn from those professionals who have a long history of successfully responding, adapting to change, rising to contemporary challenges and harnessing opportunities.
SPCare 2015;5(Suppl 1):A1–A32
Downloaded from http://spcare.bmj.com/ on October 19, 2017 - Published by group.bmj.com
Abstracts Results Understanding of how and when the public health agenda emerged. Conclusion Other professionals have skills we need.
PA31
BRIDGING THE GAP: STRENGTHENING RELATIONS BETWEEN FAITH AND HOSPICE. A RESEARCH PROJECT COMMISSIONED BY HOSPICE UK AND TOGETHER FOR SHORT LIVES
Sughra Ahmed. Woolf Institute, UK 10.1136/bmjspcare-2015-000906.91
Background In an age where communities are becoming increasingly diverse how are Muslim communities (the second largest faith group in the UK) impacted by a lack of engagement with hospice care? How are hospices trying to meet the needs of British Muslim patients (and their relatives) who are coming towards the end of life? Statistics and reports evidence an ageing British Muslim population who will increasingly require the support and services of hospice care. This project will go some way in enabling a strong working relationship in order that Muslims can be confident, comfortable and capable of getting in touch with their local hospice and access crucial services such as adult/ children’s hospice care. It is also important that hospices are prepared to work with British Muslims holistically using a personcentred approach, and are equipped to do so. The building of these connexions will help to create a dynamic relationship between Muslims and hospices working towards a match between the needs of Muslim communities and the services offered by hospices. Aim This project, combining both research and practice, will provide both a theoretical and practical understanding of where the challenges and opportunities lie in building a strong and vibrant relationship between hospices and British Muslim in East London. Methods . . . .
A range of in depth interviews with hospice staff and community individuals/institutions Attending meetings/conferences where hospice care and diversity is explored Host Roundtable with palliative care and faith community experts Extracting, analysing and including feedback from the Community outreach events in London and Manchester
Results Research in progress, to be continued April 2015. Conclusion TBC.
PA32
FAMILY CENTRED HEALTH CARE: A PALLIATIVE CARE APPROACH TO ENGAGE COMMUNITIES TO ADDRESS THE BURDEN OF HIV IN TANZANIA ABSTRACT
1
Manase Frank, 2Diwani Msemo, 3Elias Muganyizi, 4Paulo Mbando, 5Alick Kayange. 1The Community Center for Preventive Medicine; 2Ocean Road Cancer Institute; 3Tanzania Palliative Care Association; 4Evangelical Lutheran Church of Tanzania; 5PASADA
10.1136/bmjspcare-2015-000906.92
Background Tanzania is one of the countries most devastated by HIV and AIDS in the sub Saharan Africa. The Government of Tanzania has called for a community participation to address the burden of HIV in Tanzania1 however the uptake of this call has
SPCare 2015;5(Suppl 1):A1–A32
been minimal. This paper intends to describe the role of Palliative Medicine in engaging communities to address burden of HIV in Tanzania. Aim We aim to improve health outcomes of HIV+ children by engaging families through utilisation of palliative care principles in a low resource setting Method Single child with recurrent illness, multiple social spiritual and psychological problems was purposely selected from a pool of HIV+ children attending a PASADA HIV clinic and was offered care through palliative care approach. An interdisciplinary team of health providers was formed, goals of care were identified and care plan developed. Family members empowered with knowledge and skills to live with a HIV+ child and assigned specific role to ensure the boy’s physical, psychological and spiritual needs are met. Through retrospective chart review, clinical meetings, counselling sessions with the child, family and providers information was gathered to enrich our understanding of the process. Results Goals of care were met: cleared infections, tested for HIV, resumed school, and family unified. Hundreds of children benefited from the experience generated and expansion of the approach was governed by community engagement. Conclusion Families when empowered have much potentials that can reverse sufferings due to diseases through application of Palliative Care Principles in practice. REFERENCE 1
Tanzania Commission for AIDS. 2008 Annual Report
PA33
REFLECTIONS FROM THE INTERSECTION OF PALLIATIVE CARE AND DESIGN
Helena Kjellgren, Max Kleijberg, Ida Carlander, Olav Lindqvist, Carol Tishelman. LIME, MMC/Innovative Care at the Karolinska Institute, Sweden 10.1136/bmjspcare-2015-000906.93
This presentation is based on our reflections as two designers entering palliative care, one working with supportive environments for death and dying and one working with issues related to health-promoting palliative care. Death, dying and mourning are important universal conditions that raise existential thought and reflection. The focus of care is different here than in most other areas, as it is not about curing, and values go beyond medical perspectives. Thus, if we want to support meaningful experiences related to dying, it is necessary to look beyond institutional structures and disciplinary divisions. The practice of design has begun to move away from a primary concern with the commercial realm, to instead be used as a method to approach complexity to incrementally improve situations. A key aspect of this is to design with those concerned rather than for them. We argue that design related to contextual change requires an immersion within that context. An essential feature of design is making, and so, drawing on this disciplinary background, we iteratively try theories out, working towards minimising the gap between theory and practice. This approach, applied in a sensitive setting, has the potential to result in insights relevant in the particular situation, as well as offering transferable design methods. Convinced that the intersection of design and palliative care offers opportunities for both sectors, we will present concrete examples from our interdisciplinary research group, to talk about the opportunities and challenges of our work.
A29
Downloaded from http://spcare.bmj.com/ on October 19, 2017 - Published by group.bmj.com
PA30 Why specialist community public health nurses should work in end of life care Sandy Knowles BMJ Support Palliat Care 2015 5: A28-A29
doi: 10.1136/bmjspcare-2015-000906.90 Updated information and services can be found at: http://spcare.bmj.com/content/5/Suppl_1/A28.3
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/
