Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study

Figures & data

Figure 1 Flowchart of the iterative approach used to develop the model.

Table 1 Characteristics of study participants (n=46)

	Young people, n (%)	Health care professionals, n (%)
Total	17	29
Gender
Male	5 (29)	2 (7)
Female	12 (71)	27 (93)
Median age (range, years)	19 (13–24)	NR
Treatment center
Principal treatment center	10 (59)	23 (79)
Designated hospital	7 (41)	6 (21)

Abbreviation:NR, not recorded.

Figure 2 Flowchart of the literature search strategy and yield.

Abbreviation: DOH, Department of Health; NICE, National Institute for Health and Care Excellence.

Table 2 Seven key themes and the datasets from which where they emerged

Theme	Young people	Health care professionals	Policy and literature
Best treatment	✓	✓	✓
Recognize individuality	✓	✓	✓
Communication, interaction and relationships	✓	✓	✓
Physical and social environment	✓	✓	✓
Empowering young people	✓	✓	✓
Health care professional knowledge	✗	✓	✓
Promote normality	✗	✓	✓

Table 3 Summary of the seven key themes, with supporting quotes from the three datasets, demonstrating their contribution to the development of the conceptual model of age-appropriate care

Themes and subthemes	Dataset
	Young people’s interviews	Health care professional interviews	Policy and literature
Treatment	“The importance side of it is just everybody knowing what’s going on and what treatment needs to be had, and making sure it’s done in the safest way, and things like that.”	“In essence, it is providing the best medical treatment possible and to cure as many young people as possible.” “Treatment. […]Some patients have already done their research and they would go where they get offered the best treatment[…]clinical trials and things, some patients have asked about trials and are keen to take that route. They’re different from any other group of patients.”	“Treatment, care and support, and the information given about it should be both age-appropriate and culturally appropriate.”^Citation29 “Age-appropriate care encompasses the requirement for PTCs to ensure[…]treatment philosophy and training of staff[…]effective interface with cancer site-specific expertise”^Citation30
Recognize individuality	“Well, it [age-appropriate care] differs for everyone doesn’t it?” “Some people would need a lot more support than I did. Some people won’t need as much support as I did. Obviously, as an individual, I couldn’t say for everyone.”	“It is like with any age group, just because you fall into that age group, it doesn’t mean you all have the same needs[…] Just having the same age in common may not be enough. It should be about the individual patient and their individual needs.” “I think it’s not even about the number of the age is it? It’s about a recognizance[…]Recognizing them as an individual and that they’ve got different needs.”	“Clinicians must ensure that care is tailored to the needs of the patient and that a one size fits all approach will not meet the needs of this diverse group.”^Citation52 “These needs are influenced by a complex interaction between the condition, stage in the care pathway and individual maturity[…]services should be appropriate for individual needs.”^Citation29
Communication, interactions and relationships	“I think it [age-appropriate care] means good communication.” “Age-appropriate care, as a young person you shouldn’t be treated or spoken to any differently as to an adult in the same situation. You should be kept informed of what’s going on the whole time, because at the end of the day it’s your body.” “Sometimes you’re confused and the nurse says something different[…]the doctor says something different[…]it’s good for them both to say the same thing.”	“[…]I think about the language that we use as a team. You know, I don’t go in there and use big words to young people. I don’t understand half of them myself, so, being able to relate to young people.” “Being aware that communication actually is quite difficult can be very problematic and very complex with those young people. It’s about setting up those relationships[…]it doesn’t happen overnight.”	“Age and developmentally appropriate methods of communication can provide the necessary support.”^Citation49 “Starting at the time of diagnosis all patients should be provided with appropriate information about their disease.”^Citation18
Empowering young people	“I think it would be looking at the people who come in[…]getting their ideas and questionnaires from them saying what they like[…]get all their views and opinions you can, kind of, gather a similarity in everyone and things that everyone might enjoy.”	“When we were looking at the design of this place with particular youth groups, and we asked them what it’s about. I mean, it’s about involving young people in that at every level, and I think we did.” “[…]make them, as an absolute minimum, the partner within their care.”	“Mechanisms for empowering young people to access information; deciding what information they want, when they need it[…]”^Citation24 “Effective provision of information is an essential aspect of specialist care. Information underpins empowerment, which promotes self-care and the ability to participate in decisions[…] with information provided in an age-appropriate way and without alienating parents.”^Citation35
Environment Physical environment Social environment	“[…]a set, separate area, with somewhere just nice to relax, with sofas and stuff and games that you can play. Then, when you are more mobile and stuff, you can use the pool table, just stuff that gets you away from the bed.” “Well, the number one for me is the environment[…]seeing other people[…]having a day ward or just, kind of, a social space. I think even if you see other people but you don’t speak to them, it’s, kind of, like, a reminder that you’re not the only one who’s going through it and that, like, it’s not just you in an isolated space.” “So for me, it’s just having space and someone like [Youth Support Co- ordinator] to chat to which are both pretty bob on at the moment.” “[…]just having teenagers makes it a lot better. It feels almost as if you’re going to a ‘chemo youth club’ rather than going to a hospital. It feels quite nice that you can actually have a chat.”	“I think the environment is key and I think that’s evident from patients who have been diagnosed here and wanted treatment in [PTC] because of facilities that they have there.” “Age-appropriate care is about having an environment that absolutely works for them in the right ways.” “I think peer support is a massive thing[…]access to peer support and social activities because I guess people are at a point in their lives where developmentally so much is happening still and that development happens in the context of peers really.” “The nice environment is great, but not as important as being with each other.”	“In developing these units, we have learned that physically appropriate environments – where architecture and interior design not only provide pleasant surroundings but add to well- being of patients[…]importance of age-appropriate social area in which to relax and study.”^Citation49 “Resonant with other reports, peer contact with cancer survivors following diagnosis was identified as an important source of emotional support and a critical component of ‘age-appropriate care.’ a role model could provide motivation, especially during early periods of treatment and when feeling unwell.”^Citation24
Health care professional knowledge Clinical expertise Holistic expertise	<a>	“It’s about having professionals who are experts in the disease and in the age and in maturity and in psychology of young people and who are able to adapt to every single young person who comes through the door… expertise that is adaptable.” “They’re different from any other group of patients. I think you need specialist training to care for those patients, from a nursing point of view.” “age-appropriate care is to make sure they get adequate support in terms of either psychological support, access to staff who are confident they’re looking after teenagers and young adults who know how to deal with them, how to manage them, how to give them psychological support. Also aware of specific cancers and treatments for that age group…. Things like late effects.”	“For teenagers and young adults with cancer, the appropriate situation is to have specialized staff with specific training in the management of the cancer affecting this age group, and nurses and other staff who have a particular interest in this age group.”^Citation49 “Best practice can be achieved through the combination of an age-appropriate holistic approach…holistic care to a developmentally, psychosocially diverse age range is complicated by the spectrum of diseases…as well as care crossing both adult and paediatric services, and oncology and haematology specialties.”^Citation31
Promote normality	<a>	“I suppose age appropriate care is perhaps about us trying to minimize the disruption of that time[…]helping them stay on track with what they would want to be doing anyway, helping them form that identity that they would want to be forming anyway, with as little disruption from cancer as possible.” “So, there are the sort of facilities that allow people to carry on doing what they would be doing if they were out of the hospital and well[…]internet access, access to support with work and education and those sorts of things.” “Just to normalize how they’re feeling and to give them a sense of normality[…]”	“Age-appropriate equipment[…] facilities for normal adolescent development.”^Citation35 “This may involve encouraging the young person to bring personal items into the hospital such as pillows, duvets, photographs, games, and laptops, whilst adhering to local infection control policies and restrictions. This can help to promote a sense of normality.”^Citation31

Note:Shaded column indicates the theme was not presented in the dataset.

Abbreviation: PTC, Principal Treatment Centre.

Table 4 Description of an age-appropriate physical environment from the interviews

Young people	Health care professionals
• Colorful, bright and fun • Not babyish, no Peppa Pig • Not too serious • Not too bland • Not patronizing • Windows to the outside • Flexible visiting times • Space away from the bed • Access to technology, particularly television and the Internet	• Access to technology, specifically the Internet and social media • An environment that encourages peer support • Facilities promote normality • Not too clinical • Colorful • Not babyish or childish • Chill out space

Figure 3 A conceptual model of age-appropriate care.

Table S1 Details of articles included in the review

Reference number	Author (year)	Type of literature	Purpose/method of study (if research); title of document (if policy or others)
^Citation1	Gibson (1997)	Discussion paper	Guest editorial article
^Citation2	Geehan (2003)	Discussion paper	Personal, reflective article
^Citation3	Whelan (2003)	Discussion paper	Informative commentary paper
^Citation4	Wilkinson (2003)	Research	Qualitative study using interviews and focus groups with young people
^Citation5	Kelly et al (2004)	Research	Empirical ethnographic study
^Citation6	Eden et al (2005)	Book	Cancer and the adolescent (2nd edition)
^Citation7	National Institute for Health and Clinical Excellence (2005)	Policy	Guidance on Cancer Services – Improving Outcomes in Children and Young People with Cancer – The Manual
^Citation8	National Institute for Health and Clinical Excellence (2005)	Policy	Guidance on Cancer Services – Improving Outcomes in Children and Young People with Cancer – The Evidence Review
^Citation9	Department of Health (2007)	Policy	Cancer reform strategy – aimed to improve cancer services
^Citation10	Brierley et al (2009)	Discussion paper	Description and explanation of the charity Teenage Cancer Trust and its impact on young people’s cancer services
^Citation11	Kelly and Gibson (2008)	Book	Cancer in Adolescents and Young Adults
^Citation12	Morgan et al (2010)	Discussion paper	Informative discussion piece
^Citation13	National Cancer Peer Review Team – National Cancer Action Team (2011)	Policy	Peer review program manual for cancer services
^Citation14	Marris et al (2011)	Research	Systematic review
^Citation15	Rajani et al (2011)	Discussion paper	The international charter for the rights of young people with cancer
^Citation16	Taylor et al (2011)	Research	Qualitative study using workshops with young people and professionals
^Citation17	Blakemore (2012)	Discussion paper	Promotion and discussion surrounding the Blueprint of Care (1st edition)
^Citation18	Gibson et al (2012)	Research	A scoping exercise using focus groups with professionals
^Citation19	Smith et al (2012)	Service guidelines	Teenager Cancer Trust – Blueprint of Care (1st edition)
^Citation20	Wright (2012)	Service evaluation	Evaluation of the Teenage and Young Adult Cancer Service, Leeds: Comprehensive Report
^Citation21	Carr et al (2013)	Discussion paper	Commentary paper written by a group of experts in teenage and young adult cancer
^Citation22	Fern et al (2013)	Research	Participatory research study using peer-to-peer semi-structured interviews
^Citation23	Moran and Valiallah (2013)	Research	Master’s research using structured interviews – quantitative and qualitative data
^Citation24	NHS England (2013)	Policy	NHS Standard Contract for Cancer: Teenagers and Young Adults – Service Specifications 2013–2014
^Citation25	National Institute for Health and Care Excellence (2014)	Policy	NICE Quality Standard 55 – Children and Young People with Cancer
^Citation26	Smith et al (2014)	Service guidelines	A competence and career framework for nurses working with teenagers and young adults with cancer
^Citation27	Vindrola-Padros et al (2016)	Research	Qualitative study using semi-structured interviews with young people, families and professionals
^Citation28	Smith et al (2016)	Service guidelines	Teenage Cancer Trust – Blueprint of Care (2nd edition)
^Citation29	Taylor et al (2016)	Research	Modified e-Delphi survey exploring health care professional competency for those working with teenagers and young adults with cancer
^Citation30	Bleyer and Barr (2016)	Book	Cancer in Adolescents and Young Adults (2nd edition)

Abbreviation: NHS, National Health Service.

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