The Experience of Adolescents and Young Adults Treated for Cancer in an Adult Setting: A Review of the Literature

Abstract

The purpose of this review is to explore the literature on the experience of adolescents and young adults (AYAs) having cancer treatment in an adult setting, rather than on a specialist adolescent cancer unit. The integrative review method was used to explore the current literature. Primary research on the topic was located systematically and then synthesized into a thematic narrative. The experience of AYAs undergoing treatment in an adult setting was generally negative. This can be attributed to three themes: feeling isolated in the adult setting; the lack of empathy from staff working in the adult setting; and the inappropriateness of the adult environment for this age group. As many AYAs with cancer will continue to have treatment in adult settings, staff working in this environment should be aware of the negative experience of this cohort and the impact this can have on a vulnerable group of patients. Staff could consider simple ways of improving the AYA experience, such as connecting AYA patients with their peers to reduce isolation; adapting their approach to take account of the unique emotional needs of this age group; and considering ways of making the environment more welcoming and age-appropriate.

Introduction

Every year in the United Kingdom, 2400 adolescents and young adults (AYAs) aged 15–24 are diagnosed with cancer.¹ The United Kingdom has pioneered specialist cancer units for this cohort of patients, with the first unit opening in 1990 at the Middlesex Hospital in London.² AYA cancer units developed from the belief that young people undergoing treatment would benefit from peer support and support from staff trained to work with this age group, and also that concentrating young people within specific units would enable more clinical trials to be conducted and thereby impact upon treatments and survival rates.³ Centralizing care in the pediatric population has resulted in a marked improvement in the survival rates of children with cancer, and it was hoped that this could be replicated in the AYA population.⁴

There are now 28 AYA cancer units based within acute hospitals in urban centers across the United Kingdom.⁵ The model of care on these units has tended to borrow from pediatric oncology, with a patient-focused approach and support from a specialist multidisciplinary team.⁶ The United Kingdom's 28 specialist AYA oncology units are considered the “gold standard” in good practice guidelines⁷ and are supported by government policy.^8,9 However, the evidence base supporting specialist AYA cancer units has been questioned.^10,11 The impact of these units upon survival rates has not been established, and there is a counter argument that AYAs with cancer will have better survival outcomes if treated by oncologists specializing in tumor type rather than age group.^12,13 There is also little research exploring the AYA experience of cancer care or their preferences around place of care.^14,15

Despite the development of specialist units, it has been estimated that half of AYAs with cancer in the United Kingdom are cared for in other settings.¹⁶ Between 2001 and 2009, less than 40% of AYAs were treated on specialist units.¹⁷ The majority of AYAs with cancer are treated at their local hospital or are referred to a specialist cancer center for tumor-specific medical care. As more specialist AYA cancer units open and more beds become available, the number of AYAs treated in adult hospitals may decrease, but a significant proportion of young people with cancer will continue to be treated among adults of all ages due to geography, tumor type, or individual choice.¹⁷

There is some evidence that young people prefer specialist AYA cancer units: two-thirds of participants in a pan-European quantitative study expressed a need for AYA-specific services¹⁸; and a metasynthesis of qualitative studies revealed a negative AYA experience in adult oncology settings.¹⁵ However, the reasons behind this preference have not been fully explored. The aim of this systematic literature review is therefore to discern the unique perspective of AYAs with cancer on receiving cancer treatment in an adult setting.

Methods

A systematic literature search was conducted in January 2016. Five major electronic databases were searched: Academic Search Complete, CINAHL, PsychINFO, PubMed, and Scopus. The review question was broken down into its key components and synonyms identified for each component. The search strategies of systematic reviews in related areas were consulted for appropriate synonyms.^15,19–23 A truncated keyword search of the five electronic databases was then carried out using the following combinations of terms: [teen* or adolescen* or young adult* or youth* or young people] and [cancer or oncolog* or neoplasm*] and [experience* or opinion* or attitude* or view*] and [treatment* or care] and [hospital*]. As the PubMed and Scopus databases comprise biomedical literature, their searches inevitably produced an unmanageable number of articles. To further reduce this number, additional exclusion terms were used in PubMed and Scopus to limit the results: [NOT child*] and [NOT p*ediatric] and [NOT parent*] and [NOT palliative] and [NOT professional*]. The five databases were also searched by exploding relevant subject headings or MeSH terms in the following combinations: [“Neoplasms” and “Adolescence” and “Patient Satisfaction”] as well as [“Neoplasms” and “Adolescence” and “Hospital Units”]. In addition, Web of Science, an electronic citation database, was searched using the same combinations of truncated keywords. The reference management software Endnote was used to manage the results.

The inclusion criteria for the search were primary research that included the experience of young people, diagnosed with cancer between the ages of 15 and 24, and who received oncology treatment in an adult setting. There was no restriction on the date of publication, and studies published up to January 31, 2016 were included. No study was excluded due to geographical location or methodological approach, although only studies in the English language were included. The age range of a cancer diagnosis between 15 and 24 was chosen to correspond with the AYA age definition used in United Kingdom data collection, policy, and clinical practice.^1,9,24 Studies had to include some participants who had cancer treatment between the ages of 15 and 24, although the study may have taken a broader definition of an adolescent or AYA; there can be a wide variation in the age range used to define young people with cancer, particularly in studies from different countries.^25,26 A broad definition of adult setting was taken, incorporating both in-patient and out-patient units. Studies concerned exclusively with palliative care in AYAs were excluded, as the focus of the review is the experience of active cancer treatment.

The search of the electronic databases identified 5656 citations, and an initial screening of titles and abstracts resulted in 17 articles for full-text review. Of these, seven journal articles were identified as meeting the inclusion criteria. A flowchart illustrating the literature search is presented in Figure 1. To be comprehensive and wide ranging, the literature search also incorporated books, informally published material (“grey” literature), and supplementary searches. A search of two electronic library catalogs specializing in books (copac.ac.uk and www.worldcat.org) identified one book.²⁷ Although this book is based upon the same interviews as another included article,²⁸ both were included as they provide supplementary data to each other. A search was conducted of “grey” literature, such as theses, conference articles, and reports, via the website www.opengrey.eu. This did not identify any studies eligible for inclusion. To enhance the electronic searches, the reference lists of all included studies were examined manually, which identified a further four studies for inclusion. A scrutiny of the tables of contents of key journals within oncology and AYA oncology uncovered one further relevant study. A review of documents published by key charities, including CLIC Sargent, Teenage Cancer Trust, Macmillan, and LiveStrong, identified two studies that met the inclusion criteria. A search of the Cochrane Database of Systematic Reviews (www.thecochranelibrary.com) and Google Scholar (scholar.google.co.uk) did not identify any new studies.

FIG. 1.

Flowchart illustrating the literature search.

A total of 15 studies were identified for inclusion in the review and detailed information about these studies is provided in Table 1. The review was approached by systematically locating primary research on this topic, and then synthesizing the results into a thematic narrative. The integrative review method,²⁹ which takes a rigorous approach to synthesizing, evaluating, and analyzing the findings of diverse methodologies, has informed this literature review. No quality assessment was conducted of the 15 studies due to the small number identified, and it is acknowledged that some included studies may be considered weak against reporting guidelines.³⁰ The disparity of age ranges used across the studies meant that direct comparison between studies was also impractical. However, the 15 studies contain some AYAs with cancer in the 15 to 24 age range and therefore contain valuable primary data about their experience of cancer treatment in an adult setting. The approach to synthesizing the data contained in the 15 studies was informed by studies illustrating the use of thematic synthesis.^31–34 The findings within each of the included studies were extracted, and the text was assigned a code line-by-line. The codes were then grouped into descriptive themes. By integration and synthesis,³⁵ these themes were subsequently developed into three analytical themes. A map of the descriptive and analytical themes is provided in Table 2. The aim was to go beyond the content of the 15 original studies and generate a new interpretation of the AYA experience of cancer treatment in the adult setting.

Table 1.

Details of the 15 Included Studies

Articles	Method	Age range (diagnosis) (research)	Total no. of participants	Place of care	Country	Themes and findings identified
Enskar et al.³⁸	Qualitative interviews	15–16 (d)	4	Adult in-patient units	Sweden	Isolation, lack of peers, staff unable to relate to AYAs, lack of information, lack of facilities for AYAs, older patients' care needs taking priority
		17–19 (r)
Lockhart and Berard³⁹	Focus groups	14–20 (r)	4	Adult in-patient units	South Africa	Isolation, lack of peers, no commonality with older patients, staff focused on clinical care, staff unable to relate to AYAs, lack of information, more commonality with younger nurses, boredom, older patients' care needs taking priority
Wilkinson³⁶	Focus groups and in-depth interviews	13–20 (d)	14	Adolescents' and children's in-patient oncology unit^a	United Kingdom	Isolation, no commonality with older patients, lack of facilities for AYAs
Mulhall et al.³⁷	Semistructured interviews	13–20 (d)	10	Specialist teenage cancer in-patient unit^a	United Kingdom	Isolation, staff focused on clinical care, older patients' care needs taking priority
Reynolds et al.⁴⁷	Postal survey	13–20 (r)	31	15 AYAs treated on teenage unit, 16 on an adult or pediatric in-patient unit	United Kingdom	Lack of peers, staff unable to relate to AYAs, lack of facilities for AYAs
Smith et al.¹⁰	Electronic voting survey	14–24 (r)	271	All in-patient settings (11% of respondents were treated on an adult in-patient unit)	United Kingdom	Isolation, lack of peers, staff unable to relate to AYAs, lack of psychosocial care, lack of facilities for AYAs
Grinyer²⁸	Unstructured in-depth interviews	16–26 (d)	35	20 AYAs treated on a specialist adolescent cancer ward, 15 AYAs treated on adult in-patient units	United Kingdom	Isolation, lack of peers, staff unable to relate to AYAs, lack of psychosocial care, boredom, lack of facilities for AYAs
Grinyer²⁷	Unstructured in-depth interviews	16–26 (d)	35	20 AYAs treated on a specialist adolescent cancer ward, 15 AYAs treated on adult in-patient units	United Kingdom	Isolation, lack of peers, no commonality with older patients, exposure to death, exposure to dementia, staff unable to relate to AYAs, more commonality with younger nurses, boredom
Palmer et al.⁴⁰	Facilitated focus group	14–21 (d)	6	Pediatric or adult in-patient units	Australia	Isolation, lack of peers, no commonality with older patients, staff unable to relate to AYAs, lack of psychosocial care, lack of information, lack of facilities for AYAs, inflexible rules
Millar et al.⁴¹	Postal or online survey	18–24 (d and r)	21	Adult in-patient units	Australia	Isolation, lack of psychosocial care, boredom, lack of facilities for AYAs
TCT⁴⁶	Semistructured interviews	12–24 (r)	15	TCT or adult in-patient units	United Kingdom	Staff unable to relate to AYAs, lack of psychosocial care, lack of facilities for AYAs, inflexible rules
TCT⁴⁵	Handwritten, email and video messages	Unclear, some participants diagnosed aged 13–24	30 (approx.)	Unclear, however, several participants have experience of adult in-patient units	United Kingdom	No commonality with older patients, exposure to death, staff focused on clinical care, lack of facilities for AYAs
Fern et al.⁴⁴	Semistructured peer to peer interviews	13–26 (d)	11	Pediatric ward, adult ward and TCT unit (all in-patient)	United Kingdom	Isolation, lack of peers, exposure to death, staff unable to relate to AYAs, lack of information, boredom, lack of facilities for AYAs, inflexible rules
		16–29 (r)
Musiello et al.⁴²	Focus groups	18–22 (r)	7	Adult in-patient units	Australia	Isolation, lack of peers, older patients care needs taking priority
Olsson et al.⁴³	Focus groups	19–29 (d)	23	Adult in-patient units	Sweden	Isolation, lack of peers, staff unable to relate to AYAs, lack of psychosocial care, lack of information, more commonality with younger nurses, lack of facilities for AYAs

Although on a TCT unit at the time of the research, these studies include participants' reflections on previous experiences of adult units.

TCT, Teenage Cancer Trust; AYA, adolescent and young adult.

Table 2.

Map of the Descriptive and Analytical Themes

Descriptive themes		Analytical themes
Isolation from family and friends		Feeling isolated in the adult setting
Lack of peers
No commonality with older patients
Exposure to death
Exposure to dementia
Staff focused upon clinical rather than psychosocial care		Views about the approach of staff working in the adult setting
Staff unable to relate to TYAs
Lack of psychosocial care
Lack of information
More commonality with younger nurses
Boredom on an adult unit		The perception of the adult environment
Lack of facilities for young people
Older people's care needs taking up staff time
Inflexible rules on adult units

TYA, teenage and young adult.

Results

The 15 articles included in the review present a diversity of countries of origin and places of care, although the majority of study designs were qualitative, with only three presenting the findings of a quantitative methodology. Nine of the studies were conducted in the United Kingdom, three were conducted in Australia, two in Sweden, and one in South Africa. Participants in six of the included studies were treated exclusively on adult in-patient units. In the remaining nine studies, participants received treatment in a combination of settings, including in-patient pediatric wards and specialist teenage cancer units. Although not necessarily on an adult ward at the time of the research, these nine studies include participants' reflections on previous experiences of adult units.

By undertaking an integrative review of these 15 studies, it was revealed that the experience of AYAs undergoing treatment in an adult setting was generally negative. Three main themes contributed to this negative perception: a feeling of isolation; the lack of empathy from staff; and the inappropriateness of the adult environment for young people.

Isolation in the adult setting

The dominant theme to arise from the literature was a sense of isolation as an AYA having cancer treatment on adult wards. Participants in 12 of the included studies reported feeling isolated in the adult setting. Surrounded by older patients and without contact with other young people, participants in the studies by Wilkinson³⁶ and Mulhall et al.³⁷ considered adult wards to be lonely environments. Having had previous experience of AYA cancer units, participants were able to make comparisons between the two models of care, which appears to have made the experience of the adult setting even more difficult: “on the adult ward, it felt like I was in solitude or being punished for something I haven't done.”⁶ So negative was the experience of this participant that the adult environment was equated with being imprisoned.

This sense of isolation as an AYA with cancer in the adult setting is also prevalent in the six studies conducted outside the United Kingdom.^38–43 Participants in these studies found being surrounded by much older patients made them question why they were in the adult environment: “… there are only old people … so when I was there … young … I thought … what am I doing here?.”⁴³ These participants would have preferred to be treated alongside people of their own age, but rarely encountered another AYA with cancer. Maintaining contact with peers while in hospital was considered important, helping to overcome feelings of isolation and maintaining a connection to “normal” life. The theme of isolation in the adult setting also prevails in the participatory research conducted by Fern et al.⁴⁴ AYAs with cancer in this study ascribed a high value to the support of cancer peers, and young people without access to a specialist AYA cancer unit actively sought out peer support through other means, such as attending a camp for cancer patients. While not obtaining any benefit from being with older people with cancer, AYAs appeared to be drawn toward other young people also going through the experience of cancer.

In the two studies by Grinyer,^27,28 participants described the experience of being surrounded by much older people as demoralizing. One participant had such an extreme dislike of the adult ward that she considered withdrawing from treatment until she was transferred to an AYA cancer ward: “If I had to carry on [there], I wasn't going to go for any more [treatment].”²⁷ Only one of the participants in these two studies preferred being on an adult ward: aged 23, he felt he had more in common with adults than adolescents. This participant no longer regarded himself as an adolescent and therefore did not want to associate with other AYAs.

Three studies suggest that AYAs can find the adult environment not only isolating but also distressing and intimidating. Being surrounded by the deaths of older people on adult wards reinforced fears about their own cancer and mortality for participants in the studies by Teenage Cancer Trust⁴⁵ and Fern et al.⁴⁴ Young people were exposed to death almost immediately: “my first day in hospital … he started looking a bit pasty … I called the nurse in, only because his mouth was all ajar, and he was a bit yellow looking–and he had died.”⁴⁴ Although deaths occur on AYA cancer units, they are a more common occurrence on adult wards and AYAs with cancer are more likely to be exposed to death in this environment.²⁷ Another potentially distressing feature of the adult setting is being surrounded by patients with dementia: “they were senile who I was stuck next to. They didn't know what they were talking about … they didn't speak to you.”²⁷ Adult units appear to be an isolating experience for AYAs with cancer, which is compounded by the increased exposure to death and dementia.

Views about the approach of staff working in the adult setting

The second theme to emerge from the literature concerned the AYA perception of staff working in the adult setting. As adolescents, participants desired more support from staff and revealed a need to feel safe and secure while in hospital. Grinyer^27,28 found no criticism of the medical care in the adult setting, however, AYAs considered staff on these units to be insensitive and lacking in experience of working with young people. Participants in the study by Smith et al.¹⁰ believed that staff in the adult setting were not sufficiently skilled to deal with the needs of young people and therefore actively avoided contact with AYAs under their care. Several studies revealed that participants considered staff in the adult setting were lacking in any empathy for AYAs, were insensitive to the needs of young people and were unable to communicate with this age group.^{10,28,39–42,46} There was a sense that rather than offering any emotional or psychological support to young people, nursing staff tended to focus upon clinical tasks: one participant described his experience on an adult ward as being on a “conveyor belt type system,”³⁷ suggesting that he felt like an object rather than a patient.

One reason given for staff being unable to provide emotional support is that the physical care needs of older patients took priority and nurses did not have time to develop a relationship with younger people.^37,38,42 The dominant needs of older patients meant that certain participants felt overlooked on adult wards: “they did not have time to come in and talk to me, they had their hands full all the time.”³⁸ In some instances this led to feelings of being unsafe on adult wards.²⁷ To feel secure in the adult environment, participants in the study by Olsson et al.⁴³ desired a trusting relationship with staff and needed staff to be in control of their care.

Some participants reported that staff in the adult setting treated them like children and gave them little information or choice about treatment.^39,47 Younger AYAs reported feeling excluded from decision-making, as clinical staff communicated solely with their parents.⁴⁰ One participant reported having to challenge being excluded from discussions about their care: “a lot of the time they [health professionals] did actually try to speak to my mum or my dad rather than me, and I'd be like: Excuse me, over here.”⁴⁴ For some participants, the approach of doctors was found to be intimidating and disrespectful.⁴⁴

The literature does include some examples of the care in the adult setting being well received by participants. Some nursing staff on adult wards were seen as supportive, particularly younger nurses.³⁹ Having a good relationship with nursing staff appeared to be a crucial factor in how the adult setting was perceived: “I really enjoyed being on the ward … that's just the normal ward in hospital, but I think that's mainly because I got on really well with all the nurses … so I liked it on there.”²⁷ This participant had already had a negative experience on two previous adult wards, but a supportive relationship with nursing staff eventually enabled her to have a positive experience in the adult setting. However, the general impression of participants across the 15 included studies was that staff did not understand or empathize with young people, and this impacted negatively upon their experience in the adult setting.

The perception of the adult environment

The third theme to emerge from the literature was the negative perception of the adult environment by AYAs with cancer. This environment was described as cold, sterile, and lacking in any activities that would appeal to adolescents.⁴³ Reynolds et al.⁴⁷ compared the experience of 15 AYAs treated on an AYA cancer ward with 16 young people treated on an adult or pediatric unit. Regardless of setting, all the young people reported satisfaction with their care. However, young people on the AYA unit reported more satisfaction due to the environment and being with their peers. AYAs in the adult setting were dissatisfied by the facilities, in particular, the lack of privacy and the lack of any leisure space. The invasion of privacy and the desire for a private space while undergoing treatment also emerged from other studies: participants in Palmer et al.⁴⁰ found open wards distressing, and the desire for a private room was expressed in Enskar et al.³⁸ Nevertheless, while ensuring more privacy, side rooms had the potential to cause feelings of vulnerability: one young woman described her experience of feeling abandoned in her side room while the fire alarm was ringing.²⁷ It may be that the desire for privacy derived from self-consciousness at being the only young person with cancer on a ward of older people: “I remember when I first went to the cancer unit … I could see them looking at me as if to say: oh gosh, she's young … and I was … a bit self-conscious really. You know, because you could definitely see them all looking.”²⁷

The desire for leisure space in the adult setting was supported by the findings of Millar et al.⁴¹: participants in their study identified leisure space and activities in adult hospitals as their biggest unmet need. Boredom was also a common theme within the literature.^27,39,41,44 The adult setting lacked any distractions or activities that young people enjoyed, and some wards restricted activities because of concerns about noise.⁴⁴ Having little in common with older patients, with staff occupied with other tasks and with visiting hours restricted, some AYAs complained of having no one to talk to in adult wards.³⁹

Criticism of the facilities in the adult setting appears to be heightened by knowledge and/or experience of AYA cancer units.⁴⁶ Participants in Fern et al.⁴⁴ expressed frustration at not being given a choice about their place of care and were envious of the care on specialist AYA units. This was supported by the findings of Smith et al.¹⁰: of the 271 AYAs who participated in an electronic survey, 90% reported that they would prefer to be treated on a specialist AYA cancer unit rather than any other place of care.

Discussion

The overwhelming message emerging from the literature is that AYAs disliked having cancer treatment in an adult setting. Although there were examples to the contrary, AYAs generally had a negative experience in adult oncology settings and had a preference for a specialist AYA unit, if available. The findings of this literature review are consistent with a metasynthesis of qualitative studies, which also revealed a negative AYA experience in adult oncology settings.¹⁵ The findings are also congruent with a pan-European quantitative study revealing that this cohort of patients prefer specialist AYA cancer care.¹⁸ This review builds upon both of these studies by exploring the reasons for this negative AYA experience in adult oncology settings.

The literature reveals that AYAs with cancer experienced a deep sense of isolation in the adult setting and found little connection with fellow patients. Other studies have revealed that a strong bond can develop between patients with the same cancer, undergoing the same treatment or being cared for in the same hospital.^48–50 The support of cancer peers can be of psychosocial benefit.^51,52 This review reveals that a considerable age difference can be a barrier to making this connection and prevents the development of cancer peers. Several studies in the review suggest that being with older patients may actually be a distressing rather than supportive experience for young people with cancer. AYAs may not feel that they have the life experience to cope with exposure to issues more common in older people, such as death and dementia. Conversely, other studies have shown that AYAs with cancer can experience a strong connection with cancer patients of a similar age.⁴⁴ AYAs derive a great deal of benefit from being around other young people with cancer, however, this mutual support is denied to them when treated in the adult setting, as participants rarely came across anyone of their own age.

The support of staff appears to be particularly important to this age group. However, this review has shown that any support beyond clinical care was rarely experienced by AYAs in the adult setting. Staff in these studies may not have offered emotional support to patients of any ages; however, it seems that no concession was made to the life stage of AYAs, and no understanding or empathy was evident to young people experiencing cancer and cancer treatment, but also going through adolescence and the additional complexities associated with this. To feel secure in the adult environment, participants desired a trusting relationship with staff and needed to feel confident that staff were in control of their care. As adolescents, these participants appeared to need reassurance that adults could be depended upon to take responsibility for their welfare. However, the perceived lack of empathy from staff meant that AYAs often felt vulnerable and unsafe in the adult setting. There seems to have been little staff recognition that as a young person surrounded by older people, AYA cancer patients may find the environment challenging and would benefit from more support. Adolescence is frequently theorized as a transitional period, in which young people are developing the skills and experience to be an independent adult.^53,54 AYAs in the adult setting may therefore not be equipped to manage the challenges of cancer treatment without more nurturing and emotional support. Staff appear ill-equipped to provide the appropriate emotional support to this cohort of patients. There appears to have been a lack of understanding of the needs of this cohort of patients among staff, and there appears to have been no differentiation between an AYA patient and an older patient.

The third and final theme identified in the literature is the inappropriate physical environment of adult wards, primarily as AYA patients were prevented from engaging in the typical activities of an adolescent. The lack of privacy and lack of a social space were particularly difficult. Adolescence can be a period of self-consciousness and the adult environment can leave AYAs feeling exposed and vulnerable, particularly as they are highly visible as the youngest patient by several decades. Time with friends, without any supervision from parents or authority figures, is important to this age group and can be important in adolescent development.⁵⁵ Adult hospital settings are unable to provide a space for this peer group interaction and therefore denied AYA patients this beneficial peer support. In addition, the adult setting lacks any distractions or entertainment that young people value and can lead to feelings of boredom. The literature reveals that AYAs with cancer simply did not consider the adult setting to be an appropriate environment for young people.

Limitations

Apart from four studies specifically exploring the AYA experience of the adult setting,^27,28,43,47 most data in the review have been gleaned indirectly from studies that have a different focus. Most of the studies have some methodological weaknesses (usually acknowledged by the authors) and are based upon one place of care. The place of care in all 15 studies is an in-patient unit; none of the studies is based upon the experience of out-patient care. The findings of some studies may not be transferable to other settings or countries, for example Musiello et al.⁴² conducted their research in Western Australia, an area of the world with unique geographical challenges. Despite these limitations, there is a common drive within the included studies to conduct innovative research that will be appealing and engaging to this “hard to reach” cohort of patients. Smith et al.,¹⁰ Teenage Cancer Trust⁴⁵ and Fern et al.⁴⁴ in particular used creative methods to enable the voices of AYAs with cancer to be heard. There is a general recognition of the paucity of data around how AYAs experience cancer treatment, and the 15 studies purposefully aim to expand knowledge in this area. The motivation of listening to young people and conducting research that will improve the AYA experience of cancer care is a recurrent theme throughout the literature.

Conclusion

The adult setting appears to be a lonely, unsupportive, and unwelcoming environment for AYAs with cancer. Despite the development of specialist AYA cancer units in the United Kingdom, there will always be AYAs having treatment in the adult setting, and it would appear that their experience can be improved. The findings have implications beyond the United Kingdom, as many other countries are unlikely to have specialist AYA units, and this cohort of patients will always be cared for in general adult settings. Staff working in this environment should be aware of the negative experience of AYAs and the impact this can have on this group of patients at a pivotal period in their development. Staff could consider simple ways of improving the AYA experience, such as methods of reducing isolation, adapting their approach with this age group, and considering ways of making the environment more welcoming and age-appropriate. The findings of this review provide a basis from which oncology professionals working in the adult setting and caring for AYAs can consider making adaptations to their practice and assist in improving the experience of this unique and vulnerable group of patients.

Footnotes

Acknowledgments

The authors thank the librarians at King's College London and St. Christopher's Hospice, London for providing advice on conducting a thorough and comprehensive search.

Author Disclosure Statement

No competing financial interests exist.

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