1: Preferences for support and support services (unmet needs) |
A preference for support that focuses on “achieving life events” such as living independently and making and maintaining relationships |
Survivors |
A preference for support that assists with financial and practical elements of independent living. This may assist in helping both survivors and caregivers achieve those future goals |
Caregivers |
2: Decline in support |
A drop in availability of services once the survivor completed treatment is a concern, especially as survivors become more aware of their health and the limitations they may face. Support services should endeavour to continue supporting survivors and their caregivers in long-term survivorship |
Survivors and Caregivers |
3: Reasons for not obtaining adequate support |
Providing lay-friendly information is crucial for survivors so that they can understand the implications of their diagnosis/treatment |
Survivors |
Resources/training for clinicians to facilitate the transition from addressing parents to addressing patients may be beneficial to follow-up care in general and support in particular |
Survivors |
The dependence on informal support by caregivers highlights the variation in support services available due to location, funding, and unclear information. Consistency in support services is key to ensuring caregivers receive adequate professional support |
Caregivers |
4: The role of long-term follow-up care |
The need for continuity of support. The continuation of long-term follow-up was “easier” when the clinical teams remained the same. Childhood cancer survivors benefit from joint working practices especially during the transition from child to adult services |
Survivors and caregivers |