Supportive care needs
Due to AYA developmental stage and the impact of a diagnosis of cancer and its management, AYA have distinct supportive care needs across all domains of health which require access to multidisciplinary supportive care expertise throughout the cancer journey. The following list highlights some of these needs and responses:13
- A designated AYA key worker is an integral member of the MDT providing consistency, advocacy, advice and support to navigate health services. They can promote a holistic approach and are identified as central to the coordination of care.
- A preventive approach to psychosocial support, involving regular assessments, rather than crisis intervention is promoted. Lack of psychosocial support during and after treatment has been identified as a potential factor in the lower levels of treatment adherence among AYA compared with other age groups.
- Age-appropriate assessment tools should be used to improve understanding of AYA oncology, psycho-oncology and supportive care needs.
- Assessment of the AYA and people affected by AYA cancer is necessary to identify their information, practical, support, financial, educational or employment needs. Screening assessment should occur regularly at significant points of the cancer journey.
- Families have a key role in the care of AYA. The involvement of family and parents in the care of AYA must be negotiated and reviewed during all stages of care.
- Knowledge of normal behaviours and responses that accompany the AYA developmental stage are crucial when evaluating the impact of the illness on the young person, the appropriateness of their responses and the need for additional supportive care.
- Addressing schooling, education and training needs can assist the AYA to maintain normality, provide a focus for the future, reduces the workload on completion of treatment and maintains links with peers.
- Diagnosis and treatment may have a negative impact on some peer relationships. AYA may require support to manage these important relationships.
- Age-appropriate mental health interventions are required.
- Boundaries around expected behaviour in hospital should be set as early as possible.
- Maintenance of a reasonable quality of life may be achieved through promoting normality. AYA need to continue to achieve developmental tasks, and to participate in milestones. Showing flexibility and an understanding of the importance of these parts of the young person's life helps to support adherence and encourages trust.
- AYA have spiritual and existential needs due to their developmental stage and as a response to a cancer diagnosis.
- The provision of nutritional advice can assist in recovery, improve general quality of life and wellbeing, and reduce the likelihood of ongoing nutritional problems.
Psychosocial management of AYAs diagnosed with cancer: Guidance for health professionals.4 Psychosocial management of AYA cancer patients Working Group (2014)
- List the roles of the 'key worker'.
- Outline an example of each of these roles of the 'key worker' in practice.
Summarise current evidence about supportive care strategies to respond to the following issues faced by AYA due to treatment-related effects of osteosarcoma:
- body image
- peer and family relationships.
Challenges in the management of AYA affected by cancer
Non-compliance, refusal and abandonment of treatment are commonly reported challenges to the management of care for AYA.37 Rates of non-adherence in AYA with chronic medical conditions are estimated between 7% and 60%.38 It is suggested that the following factors may be associated with adherence in AYA populations:39
- Developmental task of gaining independence from the family may impact the ability of the adolescent to accept the control from authority figures.
- Parent-child agreement on issues around medication has been correlated with better adherence in the oncology population.
- Self-esteem, denial, social maladaptation, emotional problems and psychiatric illness influence adherence.
- Depression and depressive symptoms associated with non-adherence.
- Mood may influence adherence even in subclinical ranges.
- Higher self-esteem associated with higher adherence.
- Parent-child conflict associated with disruption to adherence.
- Strong family organisation and supportiveness, such as coordination in planning and achieving regimen goals, promotes adherence.
Key practice points for managing adherence issues with AYA include:4
- proactively identify potential non-adherence with treatment regimens
- identify the main issues for the individual and work together to address them.
An overview of evidence related to the management of adherence can be accessed in the Psychosocial management of AYAs diagnosed with cancer: Guidance for health professionals.4
AYA and experimentation
The use of recreational drugs presents an important and under-recognised issue in AYA cancer care. Young people between 20 and 29 years consistently record the highest use across a number of illicit drugs in the community and those between 14 and 19 closely follow.40
In addition to illicit drug use, young people are at a high risk of alcohol abuse (in the form of binge drinking) and of cigarette smoking. Problems associated with drug withdrawal may occur for AYA receiving cancer treatment. Drug use may reduce adherence to treatment or it may directly increase sensitivity to medications.13
An overview of evidence related to the management of alcohol and drug use during treatment can be accessed in the Psychosocial management of AYAs diagnosed with cancer: Guidance for health professionals.4
Discuss how you would assess the needs or preferences of an AYA in relation to drug and alcohol use or other taboo or illicit activities.
Describe factors which may contribute to non-adherence to the treatment regimen.
Formulate interventions that can be implemented to encourage AYA adherence to recommended treatment regimen.