ReviewNursing young people with cancer: What is “different” about it?Soins infirmiers des jeunes atteints de cancer : quelles spécificités ?
Introduction
Adolescents and Young Adults (AYA) with cancer and survivors of cancer are distinct from children and the older adults with cancer with respect to their spectrum of diseases, biology of their cancers, developmental status, psychosocial needs and long-term complications of their cancer and treatment [1]. Moreover, they are often poorly served by the dichotomy of paediatric and adult oncology services leading to disparities of care affecting patient related outcomes [2]. Efforts to improve this situation have been on-going since the early 1990s and now a variety of interventions exist so AYA can benefit not only from state of art knowledge regarding optimal cancer care, but also from research directed to the biology, treatment and specific needs of this population [3].
AYA are at a very important and unique physical and psychosocial life stage that covers a spectrum of needs: identity, independence, education/career development, romantic relationships and family planning [4]. Added to this are the challenges that cancer brings; unique medical and psychosocial needs, delayed diagnosis, lack of clinical trials/slower gains in survival rates, forced dependence, limited finances, isolation, risk of infertility [5]. This paper will describe some aspects of nursing this challenging group of patients, mixing what we know from the literature with 20 years of nursing experience.
The World Health Organization (WHO) claimed youth to be those aged 15–24 years, adolescents as those aged 10–19 years and young people as the combination of the two cohorts [6]. In this context broad acceptance that adolescents are those aged between 15–18 years can be seen, but what is less evident is an agreement on an accepted definition of young adulthood [7]. Although most agreed that young adulthood started at 19 years, it was the upper age limit that varied. In the United States of America (USA) the Surveillance, Epidemiology and End Result (SEER) Adolescents and Young Adult Program [8] set the upper limit at 29 years. The American Society of Clinical Oncology (ASCO) and the National Cancer Institute (NCI) set the upper age at 39 years [9], as did the 50 plus young adult cancer advocacy and support organizations in the USA (stupidcancer™.org 2013). Elsewhere Canada [10] and Australia [11] followed the path of SEER but the UK [12] and Europe [13] applied the upper limit at young adults’ 25th birthday (table I).
Much is written about adolescent development; biological, psychological, psychosocial, cognitive and cultural views to name but a few. In essence, each young person is an individual and many aspects of their life growing up with have helped to form their identity. It is a defined period of time where their development includes many aspects of development (table II).
What is also known is that emerging adulthood comes later in life due to demographic shifts and the financial burden of attaining higher education, which then leads to a delaying of events, i.e. marriage, leaving home and having a career [15]. These young people are now a highly mobile population, due to the ease with which travel around the globe is attained; they have ‘gap years,’ and may move cities to university/college.
It is also a time when they start to develop a positive self-image and self-esteem, and real apprehension about their changing body image [16]. Peers are of particular importance, becoming more so than parents in many cases, and fitting in with the crowd is pivotal to their sense of self and image.
Through all of this rapid development, they search for meaning in life and to establish their ‘normal.’ They may experiment with drugs and sex [17] and certainly the ‘rock and roll’ aspects of teenage years; it is a time of increased risk taking [18], and they will also push boundaries. They may question their mortality, and through the adolescent time of constructing their beliefs and future, they are also grappling with the concept of death. They are engaging in life affirmation and acknowledging and questioning death, and defining their belief systems in the afterlife, whilst incorporating their personal mortality into their evolving sense of mortality [19].
Then cancer is added to the mix. Everything as described is challenged, changed and, eventually, reshaped. Parents and carers may be pulled back to help and support the young person, they will lose some of their independence, and they may have to come back from travels/university to be cared for, and treated nearer home. Peer groups will reshape and, in many cases, move on without them – which will result in the young person feeling isolated. Milestones will be difficult to achieve. Their search for identity will be challenged and, over time, altered, and almost overnight, they are faced with their own mortality and that of their new ‘peer group.’ During their treatment trajectory, they then have many experiences not observed by their own friends, i.e. the illness/death of others around them of the same age. They will experience a perceived loss of control and their ‘normal is challenged and a ‘new normal’ develops.
Young people will tell us about their experiences and professionals can learn so much about them when we listen. Through treatment, they will find out more about themselves and others around them – it is a very steep learning curve. They will perceive that they mature more quickly than their peers, having faced issues of illness and death, whilst their peers are at home doing ‘normal’ AYA things; due to this chasm of experiences, they may then find it difficult to reintegrate. They may have changed in appearance; weight gain/loss, amputation, scars, and they will need to readjust to the person they have become, and fit back in with their peers.
Many will find that their lives may have changed direction, often described by them as ‘for the better,’ some may want their experience to count for something in order to give it some meaning, some may just want to move on and out of the system.
At the end of treatment, young people report feeling lost, scared and cast adrift rather than excited. They often feel that they shouldn’t contact their hospital care team, as that team are now busy caring for other new patients who are more sick [20]. They worry about what will happen once treatment has completed when nothing is being done to stop the cancer from returning. They are, in a sense, trying to establish the ‘new me’ having developed a different set of values and beliefs through their experience. They may experience jealousy about their home friends who don’t have the constant anxiety about cancer returning, describing the ‘Sword of Damocles,’ ‘…a metaphorical sword hangs by a single horsehair over the head of cancer survivors and shadows their lives ever after.’ [21] Their experience can often result in them experiencing survivor's guilt, along with guilt for the distress they may have caused those close to them [22].
They are now trying to re-establish their independence from parents/carers who have always been there for them – without causing upset and guilt. Importantly, they have lost the protective bubble of the ward/unit they will have been treated on – having become a second home – it is now somewhere that they need to transition away from and re-join their old world. Some will want to go and save the world or do something outstanding, the majority will just want to reintegrate without fuss or fanfare.
There will be many challenges with the relationships that they are forming/have formed. Parents, who may be in the process of ‘letting them go,’ now have to reinstate their parental bond as their child comes home to be cared for. The AYA will find this difficult as they have been in the process of being dependent in an adult world. The YP needs that dependence when they are unwell, wanting their parents near, and then they strive to feel independent again once they are better – this can cause conflict that requires careful handling. Some AYAs may be new parents, they may have partners/brothers/sisters/friends and all will require support through these challenging times. Many relationships may get stronger and others fall by the wayside.
In the UK the need for greater attention to young adults with cancer has been recognized through a number of initiatives. The 2005 NICE Guidance [12] outlines the care for those aged 0–24 years in order to achieve the best possible holistic outcomes. Age-appropriate care can be defined as a space designed to suit young people's need for privacy, personal space, peer interaction and decor to restore a sense of normality with a clinical workforce able to meet their bio-psychosocial needs [17]. The approach taken by the UK, with the financial and advocacy support of the charity Teenage Cancer Trust, has seen 28 teenage cancer units/clinical environments developed within NHS Hospitals and clinical environments [23].
Across the globe, more hospitals are adding dedicated AYA cancer units based on the model developed by the Teenage Cancer Trust in the UK – mainly in France and Italy with dedicated programmes with other parts in Europe. These units include multidisciplinary teams that offer an integrative approach to medical treatment and assessing the outcomes of these units has been done on an individual unit and patient experience level. However, assessing the value and outcomes of the model longitudinally is the aim of a collection of research projects in the UK collectively known as BRIGHTLIGHT© – results of which are beginning to emerge within the literature.
Section snippets
AYA nursing
In the UK, in particular, nurses have had leading roles in the development of this speciality, and have been pivotal to its success. There is now a large, growing body of nurses who care directly for this age group, all working together to develop the specialty, and this network is growing across the world, thanks to the strengthening international networks. In the UK, many work in age-appropriate Teenage Cancer Trust Units, or in units allied to them. What has been learned is that, having an
Adherence to treatment
Adhering to treatment can be a significant issue for many AYA patients with chronic health conditions and AYA with cancer are no different, with reports that up to 63% of patients do not adhere to their treatment regimens [40]. Factors that have been shown to affect treatment adherence in AYA patients include emotional function (depression and self-esteem), perceived illness severity [41], family support and parent–child concordance [42] and patient physician alliance [43]. Understanding how
AYA-specific issues to address as teams
Services should be structured to allow a continuation of their life including education, peer support, sexuality and fertility, ‘normal’ AYA activities and family life [51]. This also ensures that they have a sense of hope for the future, and in striving for normality they should also be encouraged to continue with ‘normal’ activities, with professionals aiding the process.
Conclusion
Nursing AYAs with cancer is becoming a specialty in its own right and, as nurses, are privileged to be a part of its development. It is this emerging specialty that requires nurses to think creatively as AYAs require flexibility and normalisation, in what is a very difficult time. Some of this flexibility may take a lot of negotiation with hospital managers who will have their own reasons for maintaining the status quo, but professionals should feel able to challenge such assumptions on behalf
Disclosure of interest
the authors declare that they have no competing interest.
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