All of the practice recommendations in this guidance are consensus based and are described as ‘good practice points’. There is a lack of high quality high level research in this area to inform and establish clinical guidelines.
Read more about the guidance development process.
| Tailor communication style to meet the needs of the patient
- Talk directly to the patient using clear and easy to understand language
- Discuss complex information in a number of different ways
- Assist the patient by initiating common questions
- Be empathic, respectful, and non-judgemental
Address issues of confidentiality and privacy early
- Negotiate the level of family involvement the young person would prefer
Actively engage with the AYA patient
- Emphasise the collaborative nature of the relationship
- Develop a holistic approach to patient management by getting to know the young person
- Focus on interpreting the responses of the patient within a developmental framework
- Nurture realistic expectations
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| Address the support and information needs of the family
- Provide family members and partners with information and psychosocial support so that they can continue to support the patient and minimise risks to their own wellbeing.
Be mindful of the needs of siblings
- Give siblings direct, age-appropriate and honest information and provide opportunities for them to ask questions.
- Provide siblings with opportunities for peer support and recreation.
- Provide support and psycho-education to parents to increase their awareness of possible issues for the patient’s siblings. Inform parents of the importance of recognising when siblings need a break or ‘time out’ from the cancer experience.
Encourage the patient to maintain healthy relationships with peers
- Provide information, and a suitable physical space, to help patients manage and maintain their peer relationships.
- Encourage – and ask the patient’s family to support – continuing peer interactions while the AYA is an in-patient.
Support the intimate relationships of AYA patients by addressing the needs of partners
- Create opportunities for the young person to discuss any issues relating to their psychosexual development and intimacy needs.
- Provide or source support for the young person and their partner to help them to navigate their relationship.
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| Address alcohol and drug use during treatment
- Include questions about past and present alcohol and drug use when taking a full medical history.
- Alcohol and/or drug use should be understood and addressed in the context of the AYA life stage.
Address the impact of treatment on fertility
- Any risks to future fertility should be raised with the patient before the start of treatment.
- When required, referrals for fertility preservation services should be made promptly.
Address the impact of treatment on the patient’s sexuality and sexual function
- Provide information about safe sexual practice during treatment.
- Refer to a sexual health specialist or family planning clinic as required.
Address the impact of treatment on physical function and appearance
- Acknowledge and discuss physical changes or disfigurement due to treatment and the impact of such on daily living and/or body image.
- Arrange access to a dietitian and/or exercise physiologist for nutrition and exercise support as required.
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| Incorporate psychosocial screening and care planning as standard in AYA patient management
Provide psychosocial care within a holistic framework
- Understand and respect the external pressures and stressors for the young patient. These should be addressed as part of supportive care planning.
Proactively identify and manage any psychological distress
- Conduct a brief screening for symptoms of anxiety, depression or other mental health issues that may require referral.
- Professionals working with AYA patients should be aware of developmental differences and of best practice in managing distress of young people.
- A referral directory to appropriate community and private mental health professionals should be developed if access to internal psycho-oncologists is not possible or appropriate.
Be mindful and respectful of the existential or spiritual beliefs and needs of patients
- Young people should have the opportunity to explore existential and spiritual issues in a trusting relationship.
Incorporate the survivorship needs of the young person as part of their patient management
- A psychosocial needs assessment should be conducted at regular intervals during post-treatment care.
- All institutions treating young people should have access to resources and/or referral information that can help the young person to maintain connections with their community throughout their treatment and feel ‘normal’.
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| Assist the patient to maintain peer relationships
Provide support and opportunity for the patient to continue with their education
- Identify a key contact person within the school/university/TAFE centre to discuss the patient’s needs.
- Support a young person to continue studying while they are receiving treatment.
- Provide information about special provision education support grants and scholarships.
- Be mindful of the changing needs of the patient as they transition to survivorship.
Assist the young person to address issues regarding their employment options
- Explore the possibility of flexible working arrangements.
- Advocate for the young person with relevant employment support agencies.
- Be mindful of the needs of the patient as they re-enter the workforce after treatment.
Support the young person to access appropriate financial information and support
- Support the young person as they navigate the Centrelink system.
- Inform patients and family members of all available sources of financial assistance.
- Consider referral for financial counselling.
Support the ‘normal’ development of the AYA patient throughout their treatment journey
- Do not overlook the normal developmental needs of the patient.
- Support opportunities for the patient to continue to live as ‘normal’ a life as possible during treatment and participate in age-appropriate milestones.
- Appropriate professional boundaries are essential to supporting healthy AYA development. These boundaries should allow the young person to adapt to the treatment setting without becoming dependent on it for social support.
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| Support the young person when an inpatient
- Offer patients a choice of sharing a room with other AYA patients or having privacy, wherever possible.
- Provide information about available entertainment and suggest items the young person can bring with them to promote ‘home comforts’.
- Develop strategies to reduce the time AYA patients spend on the ward.
- Develop flexible visiting hours for parents and friends.
- Be aware of child protection issues when treating AYA patients younger than 18 years old.
Maintain continuity of care as a priority for AYA patients
- Consider the implementation of a primary nurse model.
- Develop a cross-institutional handover procedure for psychosocial management.
Manage adherence issues with AYA patients
- Proactively identify potential non-adherence with treatment regimens.
- Identify the main issues for the patient and work together to address them.
Discuss use of complementary and alternative therapies
- Ask patients about their past, present or planned use of complementary and alternative therapies, in a supportive and non-judgmental way.
- Provide or refer patients to reliable sources of information and ensure they understand that some alternative therapies may interfere with their treatment and/or be harmful or toxic.
Maintain contact with the young person into survivorship
- Develop written survivorship care plans and include a complete treatment summary.
Ensure there are appropriate ‘boundaries’ between health professionals and AYA patients
- A small age gap between a patient and staff member may result in boundary issues.
- It is inappropriate for social interactions to occur between staff and patients. This includes social networking.
- Encourage patients to support existing friendships and not to rely on their treating team for social interactions and support.
Promote professional self-care for staff working with AYA patients
- Staff working with AYA patients may be particularly vulnerable to burnout. Regular and timely support for staff is essential.
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| Focus on the needs and wishes of the young person
- Involve the young person in decision-making and where possible support them to die in their place of choice.
- Maintain continuity of care and ensure continuing availability of psychosocial support.
- Ensure optimal clinical symptom management including existential symptoms and anticipatory grief.
Support family and friends
- Provide information about what to expect and sources of psychosocial support to the young person’s family members, partner and friends.
- Ensure a knowledgeable health care professional provides information on signs and symptoms of the dying process.
- Provide and recommend grief support prior to, as well as at the time of, the young person’s death.
- Develop a bereavement plan for family members for 1 to 2 years following the young person’s death.
- Encourage continuing peer interaction and support.
Support health professionals
- Ensure appropriate support and supervision is available for staff caring for AYA patients.
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