A carer is someone who, without payment, provides support to a partner, child, relative, friend or neighbour who could not manage without their help. GPs and their teams are often the first point of contact for carers, uniquely placed to recognise that someone is, or is about to become, a carer, and to provide support, information and resources.

This resource suggests ways for GPs and their practice teams to support carers practically and emotionally, to monitor their situation and wellbeing, and to identify and resolve any issues that may arise at an early stage.

CancerCare is a nonprofit organisation that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved.

Organised by topic and cancer type, CancerCare‘s Reading Room offers a variety of publications for heatlh professionals, patients and caregivers that can be downloaded as PDFs or ordered, regarding the medical, emotional and practical aspects of coping with cancer.

Development of "The clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers" was supported by a Strategic Research Grant from the National Health and Medical Research Council on Discussing prognosis and end-of-life issues in palliative care current practice and development of an evidence based training program.

Prognostic and end-of-life communication is a vital skill for health care professionals caring for patients with progressive life-limiting illnesses, and their families. Expert opinion varies, and high-quality evidence on how best to discuss these issues with such patients and their caregivers is limited. These guidelines were developed to address these issues.

The guidelines were developed through the following methods:

• Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues
• Review of previous relevant guidelines and expert opinions in the literature
• Refining of draft guidelines by an expert advisory panel.

The Clinical practice guidelines for the psychosocial care of adults with cancer have been developed by the NBOCC and the National Cancer Control Initiative in response to this need. The Steering Group used the original psychosocial guidelines for women with breast cancer as a template for the expansion of information, and further development of recommendations regarding clinical care of all adult patients with cancer.

These evidence-based guidelines have been designed for use by all health professionals who come in contact with people during the course of cancer diagnosis and treatment. The document is multidisciplinary in its focus and the recommendations applicable to diverse treatment settings.

Developed by MASCC, the world standard antiemetic guidelines for the treatment and prevention of nausea and vomiting following chemotherapy, radiation therapy or other cancer treatments were updated in 2008. Guidelines are included for the four risk groups and agents and are available for download in several languages.

The aim of this report is to present an overview of published research about the psychosocial impact of breast cancer on women‘s body image and sexuality. It also considers the supportive care issues for women and their partners, as illustrated through a series of focus group interviews.

Report on a Commonwealth-funded initiative to improve supportive care for women with breast cancer in rural and regional Australia.

An addendum to the report is also available.

A series of supportive care summaries that provide descriptions of the pathophysiology and treatment of common physical and psychosocial complications of cancer and its treatment, such as fatigue, pain, complications and side effects, nutritional concerns, emotional concerns, treatment related issues, clinical trials information, information for loved ones, surviorship and end of life information.

Each health professional version contains an overview, information on etiology, assessment and management, and references to the current literature.

Most supportive care summaries are also available in patient versions, written in easy-to-understand, non-technical language.

Report and presentations from the Supportive Care in Cancer Seminar, which considered research into supportive care in cancer and aimed to identify both current and potential research activities in this area.

The seminar focussed on areas such as quality of life, functional outcomes, rehabilitation and psychosocial outcomes, survivorship issues and spiritual care.

Fact sheet about supportive care policies in Victoria.

A series of position statements on supportive care including: state and territory travel and accommodation subsidy schemes, benefits of healthy diet and physical activity for cancer survivors and complementary and alternative therapies.

Report about tools and methods for identifying psychosocial distress.

The Carer Information Pack provides practical information that health professionals can provide to carers and family members to assist them to care for the cancer patient and themselves, produced by Aged and Community Care Division of the Australian Department of Health and Ageing. The Carer Information Pack is free to carers and provides practical information to support them in their caring role.

PDF fact sheets are available for download in PDF formats on the following topics:

• Taking a Break
• Feelings
• Managing Money
• Managing Health Care and Medications
• Legal Arrangements
• Safety at Home
• Taking Care of Yourself
• Loss and Grief
• Services for You
• Emergency Care Plan and List for recording medication requirements.

As a supplement to professional nutritional and dietary advice, information is provided for primary care practitioners, other health professionals, carers and patients regarding the nutritional needs of cancer patients and their various eating concerns, including:

• What you should know about cancer treatment, eating well, and eating problems 
• How feelings can affect appetite
• Hints to manage eating problems
• How to eat well after cancer treatment ends
• Foods and drinks to help with certain eating problems 
• Recipes 

Information brochures for clinicians detailing the therapeutic interventions that a Speech Pathologist can offer to cancer patients a head and/ or neck cancer undergoing radiation therapy.

Information can be downloaded as a PDF on a range of common side effects and issues related to Head and Neck Cancer treatment including:

• Cancer of the Head and Neck
• Trismus
• Dysphagia
• Xerostomia
• Humidifcation
• Mouth issues
• Dysphonia
• Odynophagia
• Stoma management.

Clinician fact sheets to complement the brochures are also available from:

Senior Speech Pathologist - Acute Department, Princess Alexandra Hospital, 199 Ipswich Rd, Woolloongabba QLD 4102.

A practical, simple and easy to read guide that outlined what they could expect post treatment and resources to refer to and utilise in addressing their uncertainties.

The resource

• provides information, resources and links to support patients who have received chemotherapy
• assists patients in knowing what to expect, as there is an expectation that they can resume life as normal following treatment
• reduces anxiety experienced on completion of chemotherapy
• fills the information gap reported by patients who had previously received chemotherapy.

This can be downloaded in PDF format or is available as a hard copy booklet that can be ordered from SMICS.

The beyondblue website contains information and resources about anxiety and depression and mental health for cancer patients, their carers and families, with helpful strategies to deal with signs of distress, including how to seek help for depression and anxiety.

Resources available for download include:

• "Maintaining your well-being: Information on depression and anxiety for men with prostate cancer and their partners", a booklet developed with the Prostate Cancer Foundation of Australia (PCFA)
• Prostate cancer: the risk of depression/anxiety fact sheet
• Anxiety disorders and depression in men with testicular cancer fact sheet
• Depression and breast cancer fact sheet

The website also contains information for health professionals regarding managing depression in primary care settings, indigenous-specific resources and clinical guidelines for mental health. All resources can also be ordered through the beyondblue information line (1300 22 4636).

BCNA work to ensure that Australians diagnosed with breast cancer and their families receive the very best information, treatment, care and support possible, no matter who they are or where they live.

The My Journey Kit is a comprehensive information resource for women newly diagnosed with breast cancer. The Kit has three main elements:

• My Journey Information Guide: A spiral bound booklet that guides women to information and support resources that others who have experienced breast cancer have found helpful. It also provides tips gained from experience to help throughout the breast cancer journey.
• My Journey Personal Record: A handbag sized spiral bound booklet for recording details of past medical history and contact details, treatment and any side-effects experienced, dates of consultations and what was discussed, tests and results and questions to ask the health care team. It also contains a calendar to record appointments and a form to keep track of all medical and treatment expenses.
• My Journey Satchel: A convenient place to store copies of test results, the My Journey Information Guide and any other documents to save along the way.

Order online: http://www.bcna.org.au/content/view/1079/1531/ or call 1300 78 55 62 to order your free My Journey Kit. Health Professionals can order a free sample of this resource by calling 1800 500 258 or emailing beacon@bcna.org.au.

The Hope & Hurdles Pack is BCNA‘s new resource for women with secondary breast cancer and is the result of extensive consultations with women and with those who treat and care for them. The Pack contains a number of individual items; booklets, brochures, magazines and CDs that offer information, support and hope for women and their families.

Order online or call 1300 887 340 to order your free Hope & Hurdles Pack. Health Professionals can order a sample of this resource by calling 1800 500 258 or emailing: beacon@bcna.org.au

This booklet provides information about the emotional and social impact of cancer. It has been written for people diagnosed with cancer, their family and friends.

The booklet may be most useful for people recently diagnosed with cancer or currently undergoing treatment though there are issues discussed that may be relevant at other times throughout your cancer journey.

Cancer Voices Australia provides a national, independent voice for people affected by all types of cancer, linking and collaborating with state Cancer Voices in ACT, NSW, QLD, VIC, WA and SA.

Cancer Voices Tasmania will commence shortly. CVA is a respected and integral part of the national cancer control arena, working collaboratively with its member organisations, the Federal Government, Cancer Australia, Cancer Councils, the Clinical Oncological Society of Australia, other clinical bodies and key stakeholders to improve services and care for all people affected by cancer in Australia.

This tool for patients provides information about the psychological and social aspects of a cancer diagnosis.

This tool includes the following sections:

• Cancer will change your life
• Learning you have cancer
• Family matters
• Sharing your feelings about cancer
• Learning about your cancer and feeling more in control
• People helping people
• Dealing with a new self-image
• Living each day
• Resources for learning more

The NexProfiler Tool for Cancer is an interactive decision-support tool, which enables cancer patients to make better informed treatment decisions using information from evidence-based, peer-reviewed medical literature describing specific conditions, treatment types, and the exact topics that should be discussed with medical professionals.

Includes tools for the following cancers:

• Bladder Cancer
• Breast Cancer
• Cervical Cancer
• Colorectal Cancer
• Head and Neck Cancers
• Hodgkin Lymphoma
• Kidney Cancer
• Leukemia - Adult ALL (lymphoblastic)
• Leukemia - Adult AML (myelogenous)
• Leukemia - Adult CML (myelogenous)
• Lung Cancer - Small Cell
• Lung Cancer- Non-Small Cell
• Melanoma
• Multiple Myeloma
• Non-Hodgkin‘s Lymphoma
• Ovarian Cancer
• Pancreatic Cancer
• Prostate Cancer
• Testicular Cancer
• Uterine Cancer

A series of accurate, up-to-date and authorative cancer information and resources from Europe‘s leading cancer information service for people with cancer and their families about common issues that arise.

This booklet has been prepared to help people with cancer understand how cancer and its treatment may affect their sexuality, and to help to rebuild their sexual confidence.

This section of the TCCA website provides information about the support available to people with cancer at a national and state level.

This includes:

• counselling services
• support groups and networks
•  education groups
• programs and information
• practical assistance
• accommodation

Information for health professionals regarding the fertility-preservation options available to patients at the time of their cancer diagnosis, prior to the commencement of treatment.

Tool for measuring level of distress in cancer patients can be downloaded from the NCCN website following free registration.

EPERC provides resource to End of Life/Palliative healthcare professionals through support from the Medical College of Wisconsin. The site is intended to support individuals involved in the design, implementation, and/or evaluation of End-of-Life/Palliative education for physicians, nurses and other health care professionals.

Major content areas in EOL/Palliative education include:

• pain
• non-pain symptoms
• communications skills
• ethics
• terminal care
• clinical interventions used near the end-of-life

Education materials are arranged by format including:

• Behaviorally Anchored Rating Forms
• Cases
• Evaluation Forms
• Multiple Choice Exams
• Pocket Instructional Aids
• Slide Presentations
• Standardized Patient Materials
• Web sites

Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility and information for health professionals regarding fertility risks and options.

The site includes algorithms/pathways for referrals, a risk calculator tool, an options calculator tool and other resources for patients considering their options.

National Breast and Ovarian Cancer Centre‘s 'psychosocial care referral checklist' provides a simple way for health professionals to identify patients at higher risk of psychosocial distress who may benefit from additional assessment and appropriate referral for psychosocial care.

This resource includes the following:

• Explanatory notes
• Psychosocial care referral checklist
• Distress Thermometer (note this pdf is provided by www.nccn.org)

This resource has been designed to meet the information needs of health workers in Tasmania and is the result of a project to provide State-wide consistent and current resources. It has been developed through consultation with individuals, representatives and organisations who have an interest in improving the care of rural women who have or who have had breast cancer. 177kb

First broadcast on Four Corners on ABC TV on 18 February 2010, A Good Death follows four Australians coming to the end of their lives and the health care professionals who care for them.

Links are included to the a downloadable video link, further resources, a program transcript and an online forum.

Courtesy Four Corners, ABC TV

Respecting Patient Choices® (RPC) Program provides a quality-assured system that can be implemented to assist health professionals to discuss, record and document a patient’s preferences for their future healthcare, in preparation for a time when they might not be able to competently contribute to their end-of-life decisions; frequently (but not always) about end-of-life medical treatment.

Training in the RPC Program enables doctors, nurses and allied health workers to discuss advance care planning helpfully and sensitively with patients and their families.

This site provides information, materials and educational resources to assist health professionals to implement advanced care planning processes and support their patients at end of life.

National Breast and Ovarian Cancer Centre has developed a range of guidelines, tools and educational resources designed to support health professionals in identifying and managing psychosocial aspects of care for cancer patients. These resources are relevant for all cancer types.

Available resources include:

• Psychosocial care guidelines and recommendations
• Psychosocial care tools and proformas
• Psychosocial care reports
• National communication skills training initiative
• Psychosocial care useful links

The aim of American Psychosocial Oncology Society is to advance the science and practice of psychosocial care for people with cancer.

This includes:

• Providing a forum for professionals and individuals interested in the areas of psychological, social, behavioral, and spiritual aspects of cancer
• Raising the level of awareness of health professionals and the public about psychological, social, behavioral, and spiritual domains of care for patients with cancer
• Developing and implementing educational programs for health professionals, patients, and the public on the psychological, social, behavioral, and spiritual aspects of cancer.

OSWA is a member group of COSA dedicated to the enhancement of psychosocial services to people with cancer and their families. OSWA is the peak organisation for Australian Oncology Social Workers, providing a forum for information, exchange, networking and ready access to resources to support of the practice of oncology social work.

The APS is committed to advancing psychology as a discipline and profession.

It spreads the message that psychologists make a difference to peoples lives, through improving scientific knowledge and community wellbeing. APS members form a dynamic group that advocate for psychologists at all levels of government. They are constantly promoting the contributions psychology makes to people‘s health and wellbeing, and to understanding important social issues facing Australian society.

The Australian Psychosocial Oncology Society‘s mission is to promote the psychosocial care of patients with cancer, their families and carers, to enhance the capacity of health professionals to deliver optimal psychosocial care, and to promote the timely translation of research into clinical practice. Membership is open to all members of COSA who are interested in the psychosocial care of patients with cancer and their families.

The Centre for Health Research & Psycho-oncology (CHeRP) is a behavioural research group established in 1988 with funding from the Cancer Council NSW and is based within the Faculty of Health, University of Newcastle.

CHeRP‘s mission is to undertake the highest quality research and relevant training in order to contribute to a reduction in the burden of illness imposed by cancer. Research focus is on: primary and secondary prevention of cancer; behavioural aspects of the consequences of cancer; and the care of cancer patients.

CeMPED‘s mission is to support excellent research across the interface of Psychology, Medicine and Public Health to answer questions about:

• the behavioural factors which promote good health and prevent disease
• ways to enhance the psychosocial adjustment of patients and carers
• ways to increase use of evidence in health care decision making
• ways to support patients to be more involved in their own health care.

CeMPED‘s research strengths lie in three themes:

• Doctor-patient communication
• Evidence-based, shared decision making
• Psycho-Oncology

Founded in 1984, the International Psycho-Oncology Society (IPOS) was created to foster international multidisciplinary communication about clinical, educational and research issues that relate to the subspecialty of psycho-oncology and two primary psychosocial dimensions of cancer:

• Response of patients, families and staff to cancer and its treatment at all stages
• Psychological, social and behavioral factors that influence tumor progression and survival.

Membership is open to individuals with a diversity of clinical and research backgrounds. These include, but are not limited to, physicians, social workers, nurses, psychologists, rehabilitation specialists, epidemiologists, social scientists, and educators. Currently, there are over two hundred members from thirty-eight countries.

IPP-SHR is a collaborative initiative jointly funded by the National Health and Medical Research Council and CQUniversity. The primary aim of this international program in research is to examine and document the human experience of serious illness (both physical and mental).

IPP-SHR is a broad program addressing a wide range of topic areas including:

• haematology/oncology
• mental health
• palliative care
• acute medicine; bioethics
• rural and remote health
• Indigenous health
• spirituality
• paediatrics
• birth studies
• service delivery evaluation

In essence the program is concerned with contributing to the development of psycho-social services that assist people to deal with the many challenges associated with serious physical and/or mental illness.

The core work is to make a difference and this is achieved through research, publication, education and consultancy activities.

The Mental Health Professionals Network (MHPN) is a national initiative committed to supporting the development of collaborative mental health services in the primary care sector, offering targeted resources, support and workshops to enable high quality interdisciplinary networking between local groups of mental health professionals.

The Multinational Association of Supportive Care in Cancer (MASCC) is an international, multidisciplinary organization. MASCC/ISOO is unique in that it is a multiprofessional organization that encompasses all aspects of cancer care beyond direct antineoplastic approaches.

The membership profile includes oncology medical, surgical, and radiology physicians, nurses, dentists, dental hygienists, pharmacists, social workers, dieticians, outcomes specialists, psychologists, statisticians, infectious disease specialists, educators and representatives from industry and non-profit sectors.

The Psycho-Oncology Co-operative Research Group (PoCoG) was established in 2005, in response to a recognised need to develop the capacity and co-ordinated collaboration to conduct large-scale, multi-centre psycho-oncology and supportive care research.

Membership (free) is open to researchers and health professionals from Australia and New Zealand. PoCoG is one of the ANZ cancer co-operative clinical trials groups (CCTGs) developed under the auspices of the Clinical Oncological Society of Australia (COSA).

The PoCoG website offers news and information about psychosocial research and developments in supportive care in oncology. PoCoG also runs a Quality of Life Office which provides online information and resources relating to the assessment of quality of life in people affected by cancer.

The website also includes a clickable world map of psycho-oncology research centres to foster collaborations and networks among researchers in psycho-oncology in Australia and around the world.

Australian & New Zealand Society of Palliative Medicine (ANZSPM) is the specialty medical society that facilitates professional development and support for its members and promotes the practice of palliative medicine to improve the quality of care of patients with life threatening illnesses and support for their families.

ANZSPM supports trainees, conducts CPD activities such as functions, conferences and workshops, and provides specialist advice and support to other organisations.

An edition of Cancer Forum (March 2006) focusing on psycho-oncology and the importance of psychosocial and supportive care including information regarding patient distress and grief, sexuality and fertility issues, support during treatment, mental health, support for carers and available support groups and resources.

A diagnostic tool with literature references and website links to support psycho-oncological research collection.

In this article, we describe the communication skills program entitled Oncotalk that we have developed for medical oncology fellows with funding from the National Cancer Institute. This program uses educational techniques that are evidence based, and the content is tailored to medical oncology fellows.

Components of this program that are available on our Web site (http://depts.washington.edu/oncotalk) could be adapted to other settings.

An edition of Cancer Forum (July 2010, Volume 34, No. 2), the journal of the Clinical Oncological Society of Australia and The Cancer Council of Australia, with a focus on symptom management in supportive care and associated issues.

An edition of Cancer Forum (November 2009, 33(3), the official journal of the Clinical Oncological Society of Australia (COSA), dedicated to the topical issues of survivorship and matters relating to living life after cancer.

The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care.

Patient education is also a priority and a link is provided to NCCS‘s award-winning Cancer Survival Toolbox® to assist patients about quality cancer care. Patient education is also a priority, leading to the development of NCCS‘s award-winning Cancer Survival Toolbox to assist patients about quality cancer care.

A Facilitator‘s Manual has been developed to assist health care professionals to implement the toolbox in a health care setting.

Cancer.Net‘s survivorship section provides helpful information for cancer survivors and their friends and family with links to various resources.

Focuses on survivors of adult cancer during the phase of care that follows primary treatment, recommending that each cancer patient receive a "survivorship care plan." The focus is on survivorship with information about the importance of care coordination.

The Handbook on Cancer Survivorship responds to the diverse needs of survivors and their support communities by comprehensively addressing the major issues in the field, from the burden of survivorship to secondary prevention.

Editor Michael Feuerstein, himself a cancer survivor, and sixty other top scientist-practitioners analyze in depth how survivors meet and manage the challenges of life after cancer, and what clinicians, researchers, and public health systems can do to ease the transition.

The Handbook‘s 27 comprehensive chapters include the latest research and practice related to:

• Survivors quality of life, and how it can be assessed
• Managing everyday and chronic stress
• Depression, anxiety, pain disorders, and cognitive changes
• Coping, adaptation, and resilience
• Behavior change strategies - exercise, weight control, smoking cessation
• Cancer survivorship centers and other models for follow-up care
• Survivor, clinician, and international perspectives
• New frontiers in practice, research, and policy.

Such wide-ranging coverage benefits everyone involved in cancer survival:

• primary care providers
• oncologists
• behavioral health specialists
• physical and occupational therapists
• nutritionists
• epidemiologists
• health systems professionals and policymakers
• and, of course, survivors themselves and their families.

A website for people who have completed treatment for early breast cancer, designed to answer any questions about life after treatment. Includes a series of interviews featuring a number of breast cancer survivors, who talk about their experiences after treatment for breast cancer.

A booklet focusing on the issues affecting cancer survivors following the completion of their treatment, including advice for returning to a 'normal' life and dealing with practical issues, and information regarding anxiety and depression, follow up care, long term side affects and staying healthy.

Transcript of the "Surviving Survival" edition of the television program, Four Corners, about the experiences of cancer patients after 5 years of post-treatment survival.

To borrow a video of the episode, call The Cancer Council Helpline 13 11 20.

A number of cancers can now be cured but many cancer survivors feel that the medical system fails to meet their critical, unique and varied ongoing emotional, physical, and spiritual needs including included issues of depression, sexuality, pain, fear of disease recurrence, difficulties in relationships, and financial strain.

This newsletter, published by The Psychosocial and Nursing Advisory Board to the New Jersey Commission on Cancer Research, includes a selection of recent journal articles relating to survivorship issues:

• Addressing the Psychosocial Needs in Cancer Care
• Physical Effects in Cancer Survivors
• Sexuality and Cancer Survivorship
• Employment, Insurance and Financial Issues
• Spirituality and Cancer Survivorship
• Courageous Cancer Couple-Meaningful Meanderings.

Information and advice about healthy eating and physical activity for people who have survived cancer.

Provide information and support to your patients who have completed treatment by encouraging them to attend the Living Well After Cancer Program, a free 2 1/2 -hour program community education program, held throughout NSW, run by The Cancer Council NSW with trained cancer survivors that includes practical information and open discussion for people who are cancer survivors, their carers, family, friends and work colleagues.

Participants will:

• Learn about the possible changes, challenges and opportunities they may face after completing cancer treatment
• Have the opportunity to connect with others on a similar journey
• Share tips, ideas and activities for living well after cancer.

Visit the website for the schedule of workshops and further information.