AUSTRALIAN AND NEW ZEALAND STILLBIRTH ALLIANCE. A regional office of the International Stillbirth Alliance

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1 AUSTRALIAN AND NEW ZEALAND STILLBIRTH ALLIANCE A regional office of the International Stillbirth Alliance STRATEGIC DIRECTIONS AND GOALS FOR This document outlines the mission, vision, guiding principles, and strategic goals for ANZSA over the next 5 years.

2 STRATEGIC DIRECTIONS AND GOALS Introduction Stillbirths are deaths of unborn babies. WHO defines a stillbirth as the death of a baby after 22 completed weeks of pregnancy, or when the baby weighs at least 500 grams. However, there is still no international standard to define when a baby is considered stillborn. In Australia and New Zealand (ANZ) the definition of 20 weeks and/or 400 grams is commonly used. It is estimated that 3.2 million stillbirths occur each year worldwide - 98% occurring in low and middle income countries. In high income countries, one in babies born are stillborn. Many of these deaths are potentially avoidable. Stillbirth is an under-acknowledged and under-investigated public health problem globally. In 2009, 2500 babies were stillborn in Australia and New Zealand. The stillbirth rate has not declined in over 15 years despite reductions in other infant deaths. Indigenous families in Australia have twice the risk of stillbirth. In Australia and New Zealand stillbirth is ten times more common than SIDS; a condition which has received much attention. Further, due to limited resources and lack of education for care providers, bereavement support for parents is suboptimal in many regions. The International Stillbirth Alliance (ISA) was formed in 2002 as an alliance of member organisations and individual supporters which works towards evidence based strategies for stillbirth prevention and bereavement care world wide and promotes and supports high quality stillbirth research. The Australian and New Zealand Stillbirth Alliance (ANZSA) was established as a regional office of ISA in 2007 to undertake activities which are aligned with ISA at a regional level. ANZSA shares the vision, mission and goals of ISA relevant to the local setting across Australasia. ANZSA, with its member organisations, and individual supporters promotes a collaborative approach to undertaking research, improving clinical practice, improving care for affected families and raising public awareness to reduce the risk of stillbirth and. ANZSA and ISA collaborated in the development of the Strategic Direction and Goals of both organisations. The two differ only in the geographic scope of activities (ANZ versus global) and also in the role in research; ANZSA undertakes and supports collaborative research, clinical practice and education activities whereas ISA works to facilitate and promote such activities. ANZSA Strategic Direction

3 Mission why we exist To help families throughout ANZ, both now and in the future, by reducing the risk of stillbirth and ensuring appropriate care for parents whose baby is stillborn. Vision what we aspire to To reduce the stillbirth rate and improve bereavement care in ANZ through the conduct of high quality collaborative research, development and promotion of best practice in maternity care, education and public awareness initiatives focussing on those in most need. Guiding Principles what we believe ANZSA is guided by the belief that collaboration and capacity building facilitate understanding and prevention of stillbirth and the delivery of optimal preventive and bereavement care. ANZSA Strategic Direction

4 Guiding Principle 1: Collaboration ANZSA welcomes all organisations, individuals and communities sharing our philosophy; We collaborate with ISA in promoting its goals - existing as a regional office which aims to better understand and prevent stillbirth in the ANZ setting; ANZSA promotes collaboration between health care professionals, researchers and affected families, communities, and between organisations, states, nations in ANZ. Guiding Principle 2: Capacity Building ANZSA works to support and develop those non-profit organisations which aim to increase the understanding and awareness of stillbirth, and provide support for affected families particularly in areas of most need. Guiding Principle 3: Understanding ANZSA is focused on understanding stillbirth in the broadest sense: research into why stillbirths occur, how theses deaths can be prevented, how we can close the gap between indigenous and non-indigenous rates, how to provide optimal care for affected families and how to build an understanding and awareness about the issue throughout ANZ society; ANZSA s purpose is to make stillbirth research a priority for research funding organisations and donors to ensure the promotion and conduct of high quality regional, national and/or international collaborative research; ANZSA will facilitate the development, implementation and in some instances, education of clinical practice standards and policy; ANZSA provides a forum for organisations and individuals to learn from each other, creating a central source for high quality evidence based information on stillbirth. Guiding Principle 4: Prevention ANZSA works to implement evidence-based preventive measures within State and Territory health care systems and throughout ANZ society, focusing particularly on the needs of disadvantaged populations such as Indigenous families; ANZSA works to improve the delivery of maternity care. Guiding Principle 5: Bereavement Care ANZSA aims to: Raise awareness amongst medical professionals, parent organisations and ANZ society about the impact the loss of a baby through stillbirth has on parents and families; Raise awareness amongst medical professionals, parent organisations and ANZ society about the needs of these parents and families of stillborn babies; Improve the quality of care affected parents receive, both in health care and through parent-based organisations, for the prevention of recurrence and to integrate, into the lives of affected families, the loss of their baby. ANZSA Strategic Direction

5 Strategic Goals what we aim to achieve Goal 1: Collaboration To promote collaboration between organisations and individuals including parents and communities, bereavement carers, health care professionals, researchers and policy makers that aims to prevent stillbirth, improve clinical practice, improve care for affected families and raise public awareness Goal 2: Capacity building To enhance local capacity to address the issues associated with stillbirth focusing on ANZ and those populations with greatest need Goal 3: Understanding To maintain and disseminate high quality evidence based information on stillbirth for parents, bereavement carers, researchers, health care professionals and policy makers Goal 4: Prevention To develop and disseminate best practice recommendations and facilitate high quality research and audit which addresses stillbirth priority areas for the differing needs across ANZ Goal 5: Bereavement care To enhance the delivery of appropriate care for parents through connecting parents with existing support services, supporting the establishment of adequate maternity services, and facilitating educational opportunities for carers Goal 6: Sustainability To ensure a strong and healthy organisation ANZSA Strategic Direction

6 Specific strategies how we will achieve the goals Goal 1: Collaboration To promote collaboration between organisations and individuals including parents, bereavement carers, health care professionals, researchers and policy makers which aims to prevent stillbirth, improve clinical practice, improve care for affected families and raise public awareness To ensure collaboration ANZSA will: - Promote collaboration with organisations and individuals through membership or partnership within ANZ; - Develop collaborative task forces with parents, health care professionals, researchers and policy makers to address stillbirth priority areas; - Ensure that all relevant organisations and collaborators are well informed about the activities of ANZSA through regular newsletters, other website materials and annual reports; - Host conferences, workshops and education programs which address stillbirth priority areas covering geographic, cultural and economic diversity. Goal 2: Capacity building To enhance local capacity in a bid to address the issues associated with stillbirth focusing on ANZ and those populations with greatest need To ensure capacity building ANZSA will: - Address the goals of ANZSA with a focus on developing country settings and other socially disadvantaged groups by expanding activities across ANZ; - Facilitate meetings and workshops that engage community, government and health care professionals which address issues in stillbirth prevention and bereavement care in less advantaged settings. Goal 3: Understanding To maintain and disseminate high quality evidence based information on stillbirth for parents, bereavement carers, researchers, health care professionals and policy makers To ensure the facilitation of understanding ANZSA will: ANZSA Strategic Direction

7 - Conduct regular comprehensive literature reviews on stillbirth in general to identify important research articles and other important literature and disseminate via the website and as electronic news items; - Develop and disseminate evidence based responses to frequently asked questions on stillbirth for parents and clinicians; - Ensure the ANZSA website is up-to-date and meets the needs of member organisations and individuals seeking information. Goal 4: Prevention To develop and disseminate best practice recommendations and facilitate high quality research and audit which addresses stillbirth priority areas for the differing needs across ANZ To encourage prevention ANZSA will: - Promote and support local multidisciplinary clinical networks within maternity settings to carry out the work of ANZSA; - Enhance the collection of quality data for stillbirths through standardisation of registration, investigation, data collection and classification by implementing the Perinatal Mortality Guidelines of the Perinatal Society of Australia and New Zealand; - Identify research, clinical practice and policy priority areas for the prevention of stillbirth; - Promote and facilitate the development of active risk management guidelines and improved public and professional awareness. Goal 5: Bereavement Care To enhance the delivery of appropriate care for parents - Connect parents with existing support services; - Facilitate and promote the establishment of adequate support services; - Support and promote educational programs in bereavement care for health care professionals and carers; - Collect and disseminate information on bereavement programs, weblink resources, on-going programs and conferences. Goal 6: Sustainability To ensure a strong and healthy organisation - Foster partnerships and collaborations in ANZSA activities with professional colleges and other organisations whose objectives are aligned with ANZSA; ANZSA Strategic Direction

8 - Ensure the membership of the ANZSA Board adequately represents the key stakeholders and that the combined expertise and talents of members is sufficient to meet ANZSA goals and to take the organisation forward; - Develop a fundraising strategy that provides sufficient funds to allow successful undertaking of activities according to this strategic plan; - Maintain a close working relationship with the International Stillbirth Alliance. ANZSA Strategic Direction