What support is available for young people in Aotearoa with cancer through the COVID-19 pandemic?

The AYA Cancer Network Aotearoa would like to acknowledge and thank you all for the incredible care and support being provided to young people with cancer during these challenging times.

In light of these times, the Network would like to highlight a few of the key services and resources available to support health professionals when caring for young people.

The regional AYA Cancer Keyworker role (clinical nurse specialist/social worker) 

In partnership with the existing cancer health care teams, the regional AYA keyworkers provide young cancer patients with specialised age-appropriate cancer care coordination and oversight.

Access to a regional AYA cancer Keyworker is one of the essential protective factors for a young person going through their treatment journey and is even more important right now.
Outcomes identified by young people and health providers as a result of involvement of a Keyworker include;

• improved timeliness of access to services, supports and treatments
• improved oversight and continuity
• better adherence to treatment and attendance at clinic appointments
• better psychosocial health and well-being among AYA patients and whānau

“So when I was admitted into hospital I had a keyworker, she was there in an instant...she was amazing. I didn’t know how to transition my normal life with my hospital life. There were so many networks that came in to help me but it was the keyworker that was centre to it all…she made it all link in” AYA patient 

If you are caring for a young person aged 12 to 24 years and they are not known to the AYA Cancer Service please refer them. Contact details for the AYA Keyworkers can be found on the map.  For more information on available services in your region click the below link. 

Find Out More

CanTeen Aotearoa – Keeping young people with cancer connected and supported through COVID-19 

Our NGO partners such as CanTeen Aotearoa continue to do a great job supporting young people remotely through this time. This includes providing professional telephone or online assessment and therapy, virtual peer support events and access to a 24/7 online peer support community forum. We encourage you to inform young people of this service.  Referrals can be made by health professionals or self-referral via CanTeen’s website www.canteen.org.nz. 

Online youth psychological tools/website  

A range of tools and websites are available to help provide psychological support for young people.  Links to the resources that we recommend can be found on our website; https://ayacancernetwork.org.nz/psychological-spiritual-care-tools
 
To help support our young people, please join and share our social media accounts and activity by following the links below:

If you require any further information or support please don’t hesitate to contact the Network at AYACancer@adhb.govt.nz or on 021 337 129.

Helpful tips from clinicians and young people for those working with AYAs with cancer 

1.  Decisions around needs and supports for young people should be based upon their developmental stage (their emotional, physical, cognitive and social functioning) rather than their chronological age

• Allow for flexibility and avoid decisions and rulings based on arbitrary age cut-offs such as whether the caregiver is allowed to be present in the hospital. First assess a young person’s level of maturity, their cognitive functioning and whānau circumstances.
• Be aware of how age and cognitive development may impact on a person’s understanding, communication and their participation ability in decision making processes. 
• Be mindful that young people’s behaviour patterns may fluctuate when going through cancer treatment and that regression can sometimes be observed. Therefore supports and needs will vary and require revisiting on a frequent basis.

2.  We need to continue to recognise the vital importance of whānau and other significant others in the involvement in care that AYA patients receive and the decisions they make 

• Use video communication platforms such as Zoom or three way calling as a way to include multiple whānau members for important discussions and decisions
• Encourage the young person to record the delivery of cancer education to replay back to whānau or alternatively facilitate whānau involvement in real time with the use of technology such as Messenger
• Utilise speaker phone functions to allow others to hear the news and contribute to conversations being delivered by health professionals
• Reinforce all verbal discussions with written information that can then be shared with whānau members
• Advocate for exceptions to hospital visitor restriction policies when necessary to ensure the young person has the support that they need

3.  Never underestimate the impact that your engagement has on adherence when working with young people

• Use technology such as text messaging to maintain frequent contact and monitoring
• Advocate on the young person’s behalf when necessary
• Contact your regional AYA Keyworker If you have any concerns with a young person’s adherence or social circumstances to ensure that additional supports can be put in place

4.  Acquiring skills for self-management requires significant support and is a gradual process

• Assist AYA patients in the self-management of their care through using techniques such as role-playing, practical practice, problem solving and anticipatory guidance e.g. “We know you have no access to a vehicle and public transport is not an option… so if you did develop a fever and were required to get into hospital urgently what plans do you have in place to get there?”

• Encourage AYAs to ask questions, give them time to prepare for conversations and suggest they write questions down prior to discussions

• Invite the AYA Keyworker to attend appointments virtually where possible, to reinforce messages and monitor progress 

“She would sit in on all my important appointments and then we’d go and talk about them afterwards to make sure I understood and didn’t miss anything. We’d then go over what was going to happen next, where I needed to be and what I needed to do. It was so good that I could understand.” AYA patient