13.1 Introduction

This chapter will focus on the skills and attributes required by the clinical nurse specialist (CNS) to support adolescents and young adults (AYAs) with cancer, including a discussion on some of the key priorities of care. The first author, Kerrie Sweeney, works as a teenage and young adult (TYA) CNS in the Northern Health and Social Care Trust (NHSCT), Northern Ireland (NI). This post is funded by the Teenage Cancer Trust (TCT), one of the United Kingdom’s (UK) leading AYA cancer charities that funds many CNS and youth support co‐ordinator posts across the UK in addition to providing age‐appropriate environments and support for young people and professionals. The second author, Helen Kerr, is a senior lecturer at the School of Nursing and Midwifery, Queen’s University Belfast, with a clinical nursing background in cancer and palliative care.

Within NI, the regional TYA cancer service supports young people aged 13 years up to their 25th birthday with any cancer diagnosis. Although the term TYA is generally used to describe this group of patients in the context of the UK, the term adolescent and young adult (AYA) is generally used globally, so the latter will be predominately used in this chapter.

Cancer is rare in the AYA age group. However, within the four countries of the UK, there are approximately 2110 diagnoses per year in the 15–24 year age group, with five‐year survival figures estimated at 87% (Public Health England 2021). Approximately 75 young people within this age range are diagnosed each year within NI (Cancer Research 2021). The regional TYA cancer service across all of NI was launched in 2017 to ensure that specialist support was available to all AYAs throughout NI. The TYA CNSs in NI provide support as part of a wider multidisciplinary team to any AYA who presents to any of the Health and Social Care Trusts (HSCTs) in NI as an inpatient or outpatient or to community teams.

Within NI, there are six HSCTs: Belfast, Southern, Northern, Western and South‐Eastern HSCTs and the NI Ambulance Service, which provides support to all of NI. The wider NI TYA cancer team currently consists of CNSs, specialist social workers, ward support specialists and a community worker. Teenagers aged 13–15 years old are usually treated within paediatric cancer services at the Royal Belfast Hospital for Sick Children, NI, whilst young adults who are diagnosed or who relapse from 16 years or over are usually treated within adult services across NI. The majority of AYAs in NI are treated within the main Cancer Centre located in the capital city of Belfast, NI. However, approximately half of all AYAs are diagnosed and treated in one of the regional cancer units throughout NI.

13.2 Background to Adolescent and Young Adult Cancer Services

AYAs can develop a wide range of cancers, which may cross between paediatric and adult protocols. Some more common cancer types in the AYA age group include leukaemia, central nervous system and brain tumours, lymphomas, germ cell cancers and malignant melanoma (Public Health England 2021). Whilst there are some specific ‘true’ AYA cancers, others involve late presentation of paediatric cancers or early presentation of adult cancers and may include some carcinomas, lymphoma or bone tumours (Barr et al. 2006; Carr et al. 2013; Smith et al. 2016). Close working relationships between adult and paediatric clinicians are therefore vital to ensure appropriate treatment plans (Ferrari 2014; Osborn et al. 2019). Some evidence suggests AYAs experience poorer outcomes than younger children and older adults; for example, acute lymphoblastic leukaemia and sarcoma are associated with higher survival rates when diagnosed in children than AYAs (Carr et al. 2013; Wilhelm et al. 2014; Stark et al. 2015). AYAs have a unique biology that differs from older adults or children and can result in specific challenges from a pharmacology and drug toxicity perspective as well as pose a risk of the development of distinct late effects later in life (Stark et al. 2015).

The period of adolescence into young adulthood is associated with rapid physical, psychological, social and cognitive development (Ginsberg et al. 2006; World Health Organisation 2017). Smith et al. (2016) discuss that this development includes rapid physical changes driven by hormones and changes within the brain itself and continues through adolescence into adulthood, until the late twenties or early thirties. They also discuss psycho‐social development, as young people are developing their own self‐identity, beliefs and independence and may be developing intimate relationships and relying on peers rather than families for support. This normal physical and psycho‐social development can be difficult for any young person to navigate, and a cancer diagnosis can result in immense challenges (Smith et al. 2016). Young people may be faced with complex and lengthy treatment regimens such as chemotherapy, immunotherapy, radiotherapy, stem cell transplants or surgery, which have the potential to impact normal physical development, growth and puberty. Additionally, cancer poses a risk of educational or vocational failure, which may result in feelings of loneliness and isolation as young people observe their peers moving on with their lives (Smith et al. 2016). Levels of distress in AYAs with cancer have been indicated to be more directly associated with psycho‐social concerns than specific variables related to cancer type or stage (Kwak et al. 2013; McCarthy et al. 2016).

Traditional models of care struggle to meet the evolving autonomy and psycho‐social needs of young people. Paediatric services are traditionally family‐orientated, with a strong focus on family member involvement in decision‐making (Ferrari et al. 2017; Osborn et al. 2019). Adult services, whilst promoting more individual patient autonomy, can still be challenging for young people, as many will benefit from a level of family or professional support to help in advocating for their healthcare needs and supporting them to navigate the complex healthcare systems (Sansom‐Daly et al. 2016; Osborn et al. 2019). Furthermore, psycho‐social concerns tend to be addressed with a more reactive approach in adult services compared to paediatric services, which may not suit the complex needs of AYAs (Osborn et al. 2019). Therefore, it is now well‐recognised that young people with cancer have specific and unique needs that differ from younger children and older adults, and AYA specialist services have evolved globally in response to provide specialist support.

Within the UK, several guidance documents set out requirements for AYA care. In 2005, the National Institute for Health and Care Excellence (NICE) (2005) published ‘Improving Outcomes in Children and Young People with Cancer’. This best practice guidance addresses children and young people with cancer up to the age of 24 years. Some of the key recommendations include co‐ordinated care, services close to the patient’s home, the availability of a key worker, delivery of age‐appropriate care, availability of specialist multidisciplinary staff and accessibility to clinical trials. NICE (2014) published further recommendations in 2014 by developing quality standards for ‘Cancer Services for Children and Young People’, promoting measurable quality care with respect to priorities of care, such as availability of clinical trials and fertility preservation. The National Cancer Peer Review Team – National Cancer Action Team (2011) published ‘Teenage and Young Adult Measures’ in 2011, which set out standards for benchmarking AYA services across the UK. NHS England (2013/2014) set out AYA service specifications (currently under review) outlining recommendations in relation to the organisation and delivery of AYA services in England, UK. Similar guidance is available in different geographical contexts.

Within the UK and worldwide, the role of the non‐statutory/voluntary sector has been crucial in the creation and establishment of AYA services (Lea et al. 2018; Osborn et al. 2019). Presently, within NI, funding for the AYA cancer service is provided solely from charitable organisations such as TCT, Young Lives vs Cancer, Friends of the Cancer Centre, Cancer Fund for Children and The Children’s Cancer Unit Charity. TCT was one of the first UK charities to drive AYA services across the UK in the 1990s, establishing specialist units for this group of patients (Lea et al. 2018). Similarly, in other parts of the world, non‐statutory organisations play a vital role in supporting the delivery of AYA services: for example, CanTeen Australia in Australia and Canada’s, Canadian Partnership Against Cancer (Osborn et al. 2019). Such organisations also provide vital practical support and information to young people and their families and provide support and networks for professionals. The non‐statutory and voluntary sectors play a vital role in driving policy and guidance for AYA care. TCT, for example, published a best practice document entitled ‘A Blueprint of Care’ to support AYA services within the UK, providing recommendations and advice when working with the AYA age group (Smith et al. 2016).

The term age‐appropriate care is widely used to describe delivery of AYA services (NICE 2005, 2014); however, there is no standard definition of this term. Lea et al. (2018) carried out a mixed‐methods study across 29 UK hospitals – using semi‐structured interviews involving young people with cancer and AYA healthcare professionals along with a literature review to establish what encompasses age‐appropriate care for AYAs – that led to seven key components. These include best treatment, healthcare professional knowledge, communication, interactions and relationships, recognising individuality, empowering young people, and promoting normality and the environment. These components can be used as a framework for AYA CNSs and wider teams to plan age‐appropriate AYA service delivery. A joined‐up approach to care is recommended between site‐specific and AYA cancer teams, allowing AYAs to be supported by professionals with expertise in specific cancer types as well as those with expertise in their age group (NICE 2005; Marris et al. 2011; Lea et al. 2018).

13.3 Person‐Centred Adolescent and Young Adult Care

The AYA population are a heterogeneous and diverse group; therefore, approaches to AYA care must facilitate flexibility and individualised care. Young people differ in terms of cultural, sexual and gender identity (Hammond 2017). In addition, they may differ in terms of their independent living ability. Whilst some young people may live independently from a young age, others may remain at home with parents for much longer into adulthood, perhaps focusing on their career or education before establishing their own homes and families (Fry et al. 2018). The CNS must recognise and adapt to meet the range of needs of this divergent population. A person‐centred approach to care is, therefore, essential.

Person‐centred care is defined as care that places the individual first, with a focus on respect, empowerment and holistic individualised care (Morgan and Yoder 2012). Lea et al. (2018) report that AYA professionals and young people alike value the importance of individualised care. TCT advocate for this approach in their ‘Blueprint of Care’ document, where they recommend viewing the AYA as a young person first, getting to know their interests and hobbies, rather than exclusively focusing on their cancer diagnosis (Smith et al. 2016). This approach to care and communication can help foster therapeutic relationships through building rapport, dialogue and trust between young people and professionals (Smith et al. 2016; Vindrola‐Padros et al. 2016; Ferrari et al. 2017). The AYA CNS can help to promote therapeutic relationships by focusing on person‐centred care, patient involvement and the care context (Kitson et al. 2013; Lea et al. 2018).

13.4 Support for Family and Significant Others

Person‐centred approaches in AYA care must include the young adult’s support networks such as family, siblings, friends and partners (Osborn et al. 2019). AYAs often rely heavily on these networks for support during a cancer diagnosis and treatment. The impact of an AYA cancer diagnosis on the whole family is well‐recognised, with individuals experiencing varying levels of distress (Osborn et al. 2019). Additionally, families may face particular financial or employment concerns, as it is not uncommon for parents or carers to have to take time off work to facilitate appointments, stay with a young person during a hospital admission or care for the young person at home during treatment. The AYA CNS and wider team have a role in supporting the wider AYA network, which may include siblings or their own children, friends and partner; identifying any concerns, such as educational or psychological needs; and ensuring the availability of appropriate support or signposting to other agencies (Smith et al. 2016). It is therefore essential that the AYA CNS adopts a flexible, person‐centred, family‐focused, individualised approach to care that reflects the unique needs of each individual AYA and their family.

13.5 Holistic Care

It is recommended that each young person be allocated a key worker (NICE 2005). The AYA CNS usually occupies the role as a key worker, which may involve adopting a collaborative approach along with site‐specific CNSs. (The key worker role is the focus of Chapter 5 of this book.) This role has overall coordination of care and provides the young person and their family with a point of contact for information, support and advice throughout the whole cancer trajectory (Smith et al. 2016). This promotes a level of continuity of care, which further enhances the establishment of therapeutic relationships (Vindrola‐Padros et al. 2016).

A holistic approach to AYA care is imperative to meet the unique psycho‐social needs of this population (Kwak et al. 2013; NICE 2014; McCarthy et al. 2016). A holistic needs assessment (HNA) and care planning are useful tools the CNS can use to help identify and address any concerns shared by the young person. The HNA is a vital element of the recovery package and should be offered to patients who have a cancer diagnosis at specific time points in the patient journey (National Cancer Survivorship Initiative [NCSI] 2013). The Recovery Package initiative was set up in the UK to improve outcomes for individuals with cancer with recommendations that promote holistic, person‐centred and integrated care through interventions such as HNA, treatment summaries, cancer care review, and health and well‐being events (NCSI 2013). The output of the HNA is a person‐centred care plan focusing on empowerment and promoting self‐management, with signposting and/or referral to other organisations that can provide support. The care plan should be made available to other key professionals, such as the general practitioner (GP)/primary physician, to ensure that all are aware of the specific holistic needs of the individual. Identifying these needs early and introducing appropriate support mechanisms has been associated with increased quality of life during treatment and beyond (Osborn et al. 2019).

Various HNA tools have been created specifically for AYAs that aim to identify psycho‐social and emotional needs distinct to this age group. One example is the Integrated Assessment Map (IAM) tool (TCT 2020b). AYAs can access the IAM tool remotely via a digital app that enables users to carry out a self‐assessment of any concerns they may be experiencing based on 10 specific domains, such as education and work, sex, sexuality and fertility, and thoughts and feelings. Links to information specific to their concerns are available, and the young person has the option to share their assessment with an AYA professional (TCT 2020b). This information enables the AYA CNS to open a discussion and facilitate understanding of the young person’s specific concerns, such as education, family relationships, sexuality, body image and emotional wellbeing (Smith et al. 2016). These tools can be particularly useful in initiating conversations on perhaps more sensitive topics such as sexual health, which may be difficult for some healthcare professionals to address, by providing an opportunity for the professional to introduce a discussion based on the needs identified by the individual (Albers et al. 2020).

13.6 Multidisciplinary Working

Due to the potential complexity of psycho‐social needs of young people, close collaborative working with other allied professionals is crucial (Osborn et al. 2019). The AYA CNS usually works as part of a multidisciplinary team (MDT) of specialist AYA staff, which may include social workers, youth workers, a champion or lead clinician and a psychologist (NICE 2005, 2014; Osborn et al. 2019). Each member of the team provides different strengths and skillsets, enhancing AYA care (Knott et al. 2013; Lea et al. 2019). Close teamworking amongst the AYA MDT with shared learning opportunities alongside an ethos where professionals support one another has been associated with positive care delivery outcomes (Knott et al. 2013; Vindrola‐Padros et al. 2016).

The AYA CNS should encourage early referral to relevant allied professionals, such as AYA social workers and youth workers, as this is crucial in reducing distress and improving coping mechanisms (Osborn et al. 2019). Additionally, AYAs can face many mental health concerns, which may continue into later life; therefore, early involvement of psychology services is advocated when appropriate. However, access to specialist AYA psychology or counselling services can be difficult in some areas throughout the UK (TCT 2021). Whilst some areas have established psychology services specifically for AYAs, many areas rely on services open to the general cancer population, which are facing increasing demands whilst managing limited resources. During the COVID‐19 pandemic, TCT surveyed young people with cancer and found that 53% reported difficulties accessing emotional and psychological support (TCT 2020a). The AYA CNS has a vital role in providing one‐to‐one emotional support to young people, which can be a crucial source of support, as well as developing links with local psychology and counselling services to help promote early referral and intervention, when appropriate.

It is recommended that AYAs be discussed at both a cancer site‐specific MDT meeting and an AYA MDT meeting, with the aim of combining disease‐specific and age‐specific expertise as well as incorporating holistic care to improve outcomes for patients (The National Cancer Peer Review Team – National Cancer Action Team 2011; NICE 2014). Throughout the UK, the AYA MDT is often called the multidisciplinary advisory team (MDaT) to distinguish it from the site‐specific MDT, whose primary aim is diagnosis and treatment decision‐making. The AYA CNS presents AYAs at the MDaT to facilitate holistic discussions regarding young people at diagnosis and end of treatment, and during the transition between services or any other significant events such as relapse. In NI, treatment‐related decisions currently remain with the site‐specific MDTs, and where possible, the AYA CNS attends site‐specific MDT meetings. As recommended by Osborn et al. (2019), such visibility in MDT meetings facilitates the development of relationships and wider networks, early referral and awareness of the AYA service.

Within NI, alongside established AYA referral processes, the teenage and young adult cancer service have established a screening system for red flag referrals in the AYA age group, which facilitates the CNS to identify newly diagnosed AYAs at an early stage. Many UK MDaTs now incorporate the HNA programme, the IAM portal that feeds directly into the MDaT (TCT 2020b). As previously discussed, this allows young people to access a programme remotely, identifying their own concerns and further enhancing the patient’s voice within the MDaT.

13.7 Healthcare Professional Knowledge

It is recognised that AYAs benefit from healthcare professionals with expertise in both their cancer and treatment as well as developmental, psycho‐social and practical considerations (Bleyer and Barr 2016

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