Information and resources

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Information and resources

FOR PATIENTS

General information and support:

This book, produced by CanTeen, provides support and information to help young people who have or had cancer get their head around their diagnosis, deal with practical and emotional challenges and regain a sense of control.

Website: www.nowwhat.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.

Website: www.canceraustralia.gov.au

Employment/vocational support:

WISE Employment is a not-for-profit community service organisation assisting people with a disability and disadvantaged members of the community through employment and support services (branches across Victoria, New South Wales, Tasmania and the Northern Territory).

Website: www.wiseemployment.com.au

CRS Australia provides support and assessment services to people with a disability, injury or health condition.

Website: www.crsaustralia.gov.au

myfuture is Australia's national career information and exploration service, providing information to help people make career decisions, plan career pathways and manage work transitions.

Website: www.myfuture.edu.au

A Department of Education, Employment and Workplace Relations portal to information about post-school education and training and future work opportunities.

Website: www.year12whatnext.gov.au

Financial and practical assistance:

  • Cancer Councils

Call the Cancer Council Helpline for advice about support and services in your state/territory: 13 11 20.

Website: www.centrelink.gov.au

Redkite provides financial assistance, professional counseling, emotional support and education, and vocational assistance to children and young people with cancer and their families.

Website: www.redkite.org.au

Peer support:

  • CanTeen

CanTeen, the Australian Organisation for Young People Living with Cancer, provides a national peer support network for 12–24 year olds who are living with cancer (including siblings and children of people with cancer or who have died from cancer).
Website: www.canteen.org.au

CanTeen has developed Now What as an online space where young people with cancer can share their experiences.

Website: www.nowwhat.org.au

Camp Quality provides support to children and young people (under 18) with cancer and their families.

Website: www.campquality.org.au

The Warwick Foundation is a non profit organisation focused on supporting young adults (18-40 years) on their cancer journey.

Website: http://www.thewarwickfoundation.org.au/

  • Relationships and sexuality

onTrac@PeterMac sexual health fact sheet

Website: www1.petermac.org

FOR FAMILY AND FRIENDS

General information and psychosocial support:

  • CanTeen website and resources

CanTeen, the Australian Organisation for Young People Living with Cancer, provides information for families and ‘tips’ for friends of young people living with cancer.

Website: www.canteen.org.au

Printed and audiovisual resources can be ordered (free of charge) from CanTeen’s ‘Now what?’ website, including:

- It's like this... How young people and their parents deal with cancer – a DVD for parents of young people to give an understanding of the experience of living with cancer as an adolescent and young adult. It explores the whole range of cancer experiences including that of bereavement.

- Now What...? Dealing with your sibling’s cancer – a book providing support and advice to help young people deal with the practical and emotional challenges of living with a sibling with cancer.

- Friends resources – including information young people can give to their friends on how they can show support during their cancer journey.

  • General practitioners

If you are experiencing psychological stress, anxiety or depression, ask your GP for a mental health care consultation. You may be eligible for a GP Mental Health Treatment Plan, under which your GP can refer you for Medicare-subsidised sessions with a psychologist, or an appropriately trained doctor, social worker or occupational therapist.

Website: www.health.gov.au

Redkite provides financial assistance, professional counseling, emotional support and education and vocational assistance to young people with cancer and their families. Redkite provides telephone support and telegroups (professionally facilitated telephone based peer support groups) for parents and family members of young people with cancer.

Website: www.redkite.org.au

Siblings Australia is a national organisation providing support for brothers and sisters of people with special needs including disability, chronic illness and mental health issues.

Website: www.siblingsaustralia.org.au

Grief and loss support services and information:

Resources for family members and health professionals, contact details for grief and bereavement support services and information about education and training for health professionals.

Website: www.grief.org.au

The Bereavement Care Centre provides comprehensive and accessible counselling and support services for the terminally ill and their families, and for those recently bereaved.

Website: www.bereavementcare.com.au

The beyondblue website includes information on mental health disorders, useful mental health related resources and on mental health research.

Website: www.beyondblue.org.au

  • CanTeen book: Now what…? Living with the death of your parent or brother or sister from cancer

This book addresses the issues of bereavement and grief, what it looks like, how it feels and what is normal.

Website: www.nowwhat.org.au

Palliative care information and resources for both health professionals and consumers.

Website: www.caresearch.com.au

This centre provides counselling programs and support for children and young people dealing with grief, as well as education and training for individuals, schools and other organisations handling the grief of children and young people.

Website: www.childhoodgrief.org.au

This website includes brochures for patients and family members about palliative care and grief.

Website: www.palliativecare.org.au

Redkite provides professional bereavement support including telephone and email counselling, for bereaved families of young people with cancer. This includes professionally-facilitated telephone support groups (telegroups) for bereaved parents.

Website: www.redkite.org.au


FOR HEALTH PROFESSIONALS

Psychosocial assessment of AYAs with cancer:

The AYA Oncology Psychosocial Care Manual [1] presents the first available AYA specific Screening Tool, Care Plan proforma, and Psychosocial Assessment Measure developed for use within the oncology sector.

While using as a foundation the National Comprehensive Cancer Network (2011) Distress Thermometer, and the Goldenring and Cohen (1988) HEADSS Assessment, the tools were developed in consultation with (a) Australia’s leading AYA clinicians, (b) young people currently undergoing therapy, and (c) a group of AYA survivors.

These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. They highlight a clinically-recognised minimum standard of care that all AYA patients, regardless of treatment location, have the right to receive.

For more information about the manual, including how to obtain a copy, please contact Dr Pandora Patterson, National Research & Evaluation Manager, CanTeen: Pandora.Patterson(at)canteen.org.au

Understanding the developmental needs of AYAs:

For an overview of the key developmental changes and issues for adolescents and young adults see Adolescent and Young Adult Cancer Program, A Best Practice Framework for Working with 15-25 Year Old Cancer Patients Treated Within the Adult Health Sector (section 5.1).[2]

Other recommended reading:

  • Steinberg, L and Sheffield Morris, A. (2001). Adolescent development. Annual Review Psychology, 52:83-110.[3]
  • Havighurst, R. (1972). Developmental Tasks and Education. (3rd ed.). New York: David McKay Co Inc.[4]


Assessing the impact of treatment on sexual function:

  • The PLISSIT model

The PLISSIT model of sexual counselling presents four levels of intervention, ranging from simple to more complex, allowing health professionals to raise and discuss issues according to their own level of comfort and expertise.
Pdf Version: The PLISSIT model

Supporting patients to continue with their education:

  • Young people with health conditions; Staying engaged during the senior years of education

This recent and extensive literature review by the Royal Children’s Hospital Education Institute examined the information needs of young people with health conditions, including AYAs with cancer, in ‘staying engaged’ in senior secondary school and employment pathways.[5]

Information about complementary and alternative therapies:

  • Cancer Council Australia: fact sheet, position statement and links to American Cancer Society and Memorial Sloan-Kettering Cancer Centre databases

Website: www.cancer.org.au

  • Understanding complementary therapies: a guide for people with cancer, their families and friends (Cancer Council)

Website: www.cancercouncil.com.au

Guidance on fertility preservation:

  • COSA’s guidance on fertility preservation for AYAs diagnosed with cancer

Website: http://wiki.cancer.org.au

Clinical practice guidelines:

The guidelines listed below may not be AYA-specific or cancer-specific, but include additional advice about psychosocial management and patient communication issues in this guidance.

  • Depression in adolescents and young adults

Beyondblue developed these guidelines to assist health professionals to accurately identify and effectively treat depression among adolescents and young adults. They are also intended for use by school counsellors, teachers, school psychologists and for young people, their families and friends.

Website: www.beyondblue.org.au

  • Psychosocial care of adults with cancer

The Clinical practice guidelines for the psychosocial care of adults with cancer have been developed to assist health professionals in providing optimal evidence-based psychosocial care for adults with cancer. In particular, we recommend the section on communication and interactional skills (pages 38-43).

Website: www.nhmrc.gov.au

A summary version provides an overview of the key emotional issues for health professionals to consider when treating patients with cancer.

Website: www.canceraustralia.gov.au

  • Palliative care

Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients

Website: www.centreforpallcare.org

  • Family Meetings in Palliative Care: Multidisciplinary Clinical Practice Guidelines

The clinical guidelines provide a framework for preparing, conducting and evaluating family meetings.[6]

  • Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care

The guidelines aim to assist health professionals to identify carers and family of dying people who may be at risk of complicated bereavement outcomes.[7]

References

  1. CanTeen Australia. Adolescent and Young Adult Oncology Psychosocial Care Manual. Australia: CanTeen; 2011.
  2. Palmer S, Thomas D. Adolescent and Young Adult Cancer Program, A Best Practice Framework for Working with 15-25 Year Old Cancer Patients Treated Within the Adult Health Sector. Melbourne: Peter MacCallum Cancer Centre; 2008 [Abstract available at http://www1.petermac.org/ontrac/pdf/AYA-Practice-Framework.pdf].
  3. Steinberg L, Morris AS. Adolescent development. Annu Rev Psychol 2001;52:83-110 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/11148300].
  4. Havighurst, R. Developmental Tasks and Education. 3rd ed. New York: David McKay Co Inc; 1972.
  5. Henry J, Green J, Edwards B, Meade R. Young people with health conditions; Staying engaged during the senior years of education. Melbourne: Researching Futures and RCH Education Institute;. 2009 Dec [Abstract available at http://www.rch.org.au/emplibrary/education/Dec_2009_Staying_Engaged_Literature_Review.pdf].
  6. Hudson P, Quinn K, O'Hanlon B, Aranda S. Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliat Care 2008 Aug 19;7:12 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18710576].
  7. Aranda S, Milne D. Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Melbourne: Centre for Palliative Care. 2000.


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