Adolescents and young adults have unique needs which differ from those of children or adults. In the United Kingdom, we have dedicated services, which are diverse in how they are managed and delivered. A multiple-case study was conducted in young people’s cancer services in four geographical regions of England. Data collection included: semi-structured interviews with healthcare professionals (n = 41) and young people (n = 29); and observation (total = 120 hours). Thematic analysis was used to synthesize and interpret five emerging themes describing the way a culture of adolescent and young adult-specific care developed. To develop a cultural attitude which embraced and promoted core values, leadership was needed, as well as high patient volume accessing a service. Time was essential, an adolescent and young adult-centered culture of care does not happen overnight, it needs time and dedicated staff to evolve, but once in place, services have a significant impact on the experience of care.
CarrR.WhitesonM.EdwardsM.MorganS. (2013). Young adult cancer services in the UK: The journey to a national network. Clinical Medicine, 13(3), 258–262. https://doi.org/10.7861/clinmedicine.12-2-258
DarabosK.BergerA. J.FordJ. S.SchwartzL. A. (2021). Cancer-related decision making among adolescents, young adults, caregivers, and oncology providers. Qualitative Health Research, 31(13), 2355–2363. https://doi.org/10.1177/10497323211037654
5.
DaviesH. T.MannionR. (2013). Will prescriptions for cultural change improve the NHS?British Medical Journal, 346, f1305. https://doi.org/10.1136/bmj.f1305.
6.
DaviesH. T. O.NutleyS. M.MannionR. (2000). Organisational culture and quality of health care. Quality Health Care, 9(2), 111–119. https://doi.org/10.1136/qhc.9.2.111
7.
Department of Health. (2011) Improving outcomes: A strategy for cancer. Crown Copyright.
EgenerB. E.MasonD. J.McDonaldW. J.OkunS.GainesM. E.FlemingD. A.RosofB.GullenD.AndersenM. L. (2017). The charter on professionalism for health care organizations. Academic Medicine: Journal of the Association of American Medical Colleges, 92(8), 1091–1099. https://doi.org/10.1097/ACM.0000000000001561
10.
ErezM.GatiE. (2004). A dynamic, multi-level model of culture: from the micro level of the individual to the macro level of a global culture. Applied Psychology: An International Review, 53(4), 538.
11.
FernL. A.LewandowskiJ. A.CoxonK. M.WhelanJ. (2014). Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. The Lancet Oncology, 15(8), e341–e350. https://doi.org/10.1016/S1470-2045(14)70113-5
12.
GibsonF.FernL.WhelanJ.PearceS.LewisI.HobinD., et al. (2012). A scoping exercise of favourable characteristics of professionals working in teenage and young adult cancer care: “thinking outside of the box”. European Journal of Cancer Care, 21, 330–339.
13.
HallE. (1976). Beyond culture (1st ed.). USA. Anchor.
HermanS. M. (1970) The Organization as an Iceberg: Proceedings of Organizational Development Network Conference. In: Organizational Development Network Conference,Chicago, USA.
16.
HofstedeG. (1994). The Business of International Business is Culture. International Business Review, 3(1), 1.
17.
HudelsonP. M. (2004). Culture and quality: an anthropological perspective. International Journal for Quality in Health Care, 16(5), 345–346.
18.
JainA. K.FennellM. L.ChagparA. B.ConnollyH. K.NembhardI. M. (2016). Moving toward improved teamwork in cancer care: The role of psychological safety in team. Journal of Oncology Practice, 12(11), 1000–1011. https://doi.org/10.1200/JOP.2016.013300
KellyD. (2008). The physical and emotional impact of cancer. In KellyD.GibsonF. (Eds.), Cancer care for adolescents and young adults (pp. 23–43). Blackwell Publishing.
KitayamaS. (2002). Culture and basic psychological processes--Toward a system view of culture: Comment on Oyserman et al. (2002). Psychological Bulletin, 128(1), 89–96.
24.
KontehF.H.MannionR.DaviesH.T.O (2011). Understanding culture and culture management in the English NHS: A comparison of professional and patient perspectives. Journal of Evaluation in Clinical Practice, 17(1), 111–117. https://doi.org/10.1111/j.1365-2753.2010.01376.x
25.
LeaS.GibsonF.TaylorR. M. (2019). The culture of young people’s cancer care: A narrative review and synthesis of the UK literature. European Journal of Cancer Care, 28(3), e13099.
26.
LeaS.TaylorR.MartinsA.FernL.WhelanJ.GibsonF. (2018). Conceptualsing age-appropriate care for teenagers and young adults with cancer: a mixed methods study. Adolescent Health, Medicine and Therapeutics, 9, 149–166.
27.
LenburgC. B.LipsonJ.DemiA.BlaneyD.SternP.SchultzP.et al. (1995) Promoting cultural competence in nursing education. American Academy of Nursing.
28.
LewinK. (1951). Field theory in social science. Harper & Row.
29.
LundyO.CowlingA. (1996). Strategic human resource management. Routledge.
30.
MarshallS.GrinyerA.LimmerM. (2018). The experience of adolescents and young adults treated for cancer in an adult setting: A review of the literature. Journal of Adolescent and Young Adult Oncology, 7(3), 283–291. https://doi.org/10.1089/jayao.2017.0123
31.
MarshallM.SheaffR.RogersA.CampbellS.HalliwellS.PickardS., et al. (2002). A qualitative study of the cultural changes in primary care organisations needed to implement clinical governance. British Journal of General Practice, 52(481), 641–645.
32.
MilesM.HubermanA. M.SaldanaJ. (2014). Qualitative data analysis: A methods sourcebook. SAGE Publications.
33.
Ministry of Health (1959). The welfare of children in hospital, Platt report. Her Majesty’s Stationery Office.
34.
National Institute for Health and Care Excellence. (2005a). Improving outcomes in children and young people with cancer. National Institute for Health and Care Excellence.
35.
National Institute for Health and Care Excellence. (2005b). Improving outcomes in children and young people with cancer: The evidence review. National Institute for Health and Care Excellence.
36.
NHS England & NHS Improvement. (2019). Streamlining multi-disciplinary meetings: guidance for Cancer Alliances. NHS England.
37.
O'HaraC.KhanM.McCabeM.FrancisL.MoranT (2013). Notifications of teenagers and young adults with cancer to a Principal Treatment Centre 2009-2010. North West Cancer Intelligence Service. www.ncin.org.uk/view?rid=2124 (Accessed 15th May 2021).
38.
OsbornM.LittleC.BoweringS.OrmeL (2013). Youth Cancer Services in Australia: Development and Implementation. International Perspectives on AYAO. Part 3. Journal of Adolescent and Young Adult Oncology, 2(3), 118–124. https://doi.org/10.1089/jayao.2012.0032
39.
PayneD.KennedyA.KretzerV.TurnerE.ShannonP.VinerR (2012). Developing and running an adolescent inpatient ward. Archives of Disease in Childhood. Education and Practice Edition, 97(2), 42–47. https://doi.org/10.1136/archdischild-2011-300068.
40.
RaeC. S.PoleJ. D.GuptaS.DigoutC.SzwajcerD.FlandersA.SrikanthanA.HammondC.SchacterB.BarrR. D.RogersP. C. (2020). Development of system performance indicators for adolescent and young adult cancer care and control in Canada. Value in Health, 23(1), 74–88. https://doi.org/10.1016/j.jval.2019.08.004
ScheinE. H. (2010). Organizational culture and leadership (4th ed.). John Wiley & Sons.
43.
ShawP.ReedD.YeagerN.ZebrackB.CastenllinoS.BleyerA. (2015). Adolescent and young adult (AYA) Oncology in the United States. Journal of Pediatric hematology/oncology, 37(10), 161–169. https://doi.org/10.1097/MPH.0000000000000318
44.
SimpsonD.HamiltonS.McSherryR.McIntoshR. (2019). Measuring and assessing healthcare organisational culture in the England’s National Health Service: A snapshot of current tools and tool use. Healthcare, 7(4), 127. https://doi.org/10.3390/healthcare7040127
45.
SmithS.CableM.MorganS.SiddallJ.ChamleyC (2014). Competencies: Caring for teenagers and young adults with cancer: A competence and career framework for nursing. Teenage Cancer Trust.
46.
SmithS.OlsenP. R. (2018). Introduction: Beyond No-man’s land: The Development of AYA Cancer nursing. In SmithS.OlsenP. (Eds.), Nursing adolescents and young adults with cancer (pp. 1–6). Springer International Publishing.
47.
TaylorR. M.SolankiA.AslamN.WhelanJ. S.FernL. A (2016). A participatory study of teenagers and young adults views on access and participation in cancer research. European Journal of Oncology Nursing, 20, 156–164. https://doi.org/10.1016/j.ejon.2015.07.007
48.
TaylorR. M.WhelanJ. S.GibsonF.MorganS.FernL.BRIGHTLIGHT Team;Young Advisory Panel (YAP); Core Consumer Group (CCG) and National Cancer Research Institute Teenage and Young Adult Clinical Studies Group (NCRI TYA CSG). (2018). Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement. Research Involvement and Engagement, 4(50). https://doi.org/10.1186/s40900-018-0135-x.
Vindrola-PadrosC.TaylorR. M.LeaS.HookerL.PearceS.WhelanJ., et al. (2016). Mapping adolescent cancer services: how do young people, their families, and staff describe specialized cancer care in England?Cancer Nursing, 39(5), 358–366.
51.
VinerR. M. (2007). Do adolescent inpatient units make a difference? Findings from a national young patient survey. Paediatrics, 120(4), 749–755. https://doi.org/10.1542/peds.2006-3293
52.
WhelanJ. (2003). Where should teenagers with cancer be treated?European Journal of Cancer, 39(18), 2573–2578.
53.
WhelanJ.FernL. (2008). Cancer in adolescence: Incidence and policy issues. In KellyD.GibsonF. (Eds.), Cancer care for adolescents and young adults (pp. 7–22). Blackwell Publishing Cancer.
54.
WooY.KyrgiouM.BryantA.EverettT.O’DickinsonH (2012). Centralisation of services for gynaecological cancers — A Cochrane systematic review. Gynecologic Oncology, 126(2), 286–290. https://doi.org/10.1016/j.ygyno.2012.04.012
55.
YinR. K (2014). Case study research (5th ed.). SAGE Publications.
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