See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients, families and carers at this time:

• assistance for dealing with emotional and psychological issues, including body image concerns, fatigue, quitting smoking, traumatic experiences, existential anxiety, treatment phobias, memory and concentration difficulties, anxiety/depression, interpersonal problems and sexuality concerns
• pre-school children may exhibit distress relating to unfamiliar hospital settings and staff, separation from parents, and changes in daily routine
• loss of school and contact with peers, and a longing to ‘return to normal’ are common concerns among school-aged children
• issues described by CAYA relate to education/work, relationship with parents, boredom, sadness and fear, missing doing ‘normal stuff’ with friends, forced dependence, hair loss, sleeping difficulties and physical fitness/fatigue (Patterson et al. 2021); it is also important to consider other routine aspects of CAYA health including substance use and sexual health
• potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
• managing complex medication regimens, multiple medications, assessment of side effects and assistance with difficulties swallowing medications – referral to a pharmacist may be required
• management of physical symptoms such as nausea/vomiting, and loss of physical fitness, change in weight/appetite/taste, hair loss and sleeping difficulties
• decline in mobility or functional status as a result of treatment
• assistance with beginning or resuming regular exercise with referral to an exercise physiologist or physiotherapist (COSA 2018; Hayes et al. 2019)
• psychosocial and health issues in parents and siblings, including marital discord and/or interpersonal difficulties with the patient, other children or extended family; anxiety; exacerbation of mental health problems; sibling issues.

Early involvement of general practitioners may lead to improved cancer survivorship care following acute treatment. General practitioners can address many supportive care needs through good communication and clear guidance from the specialist team (Emery 2014). Early engagement of patient and community support organisations may also lead to improve survivorship care and help address patient and carer supportive care needs.

Siblings experience significant levels of distress and psychosocial need as a result of their brother or sister’s cancer (Patterson et al. 2017). Addressing siblings’ psychosocial needs is important and is a standard of care in paediatric, adolescent and young adult oncology (COSA 2014; Gerhardt

et al. 2015; Long et al. 2018; 2020; Patterson et al. 2014).

Patients, carers and families may have these additional issues and needs:

• financial issues related to loss of income (through reduced capacity to work or loss of work) and additional expenses as a result of illness or treatment
• advance care planning, which may involve appointing a substitute decision-maker and completing an advance care directive
• legal issues (completing a will, care of dependent children) or making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

The Cancer Council 13 11 20 and Leukeamia Foundation 1800 953 081 can assist with information and referral to local support services.

CAYA age-specific information and support lines can be accessed from community-based organisations such as Canteen 1800 835 932

Quality 1300 662 267  and Redkite 1800 733 548

For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.