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Literature review final 16Nov2016.docx - Title: Experiences...

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Title:Experiences and preferences for end of lifecare for young adults with cancer and theirinformal carers: a narrative synthesis.Running Head:Systematic review of eolc experiences for youngadults#AuthorAffiliationPrimary AcademicdegreeEmail address1*NothandoNgwenyaUniversity CollegeHospital, CancerClinical TrialsUnit, London,NW1 2PG, UKPhDnothando.ngwenya@cantab.net2*CharlotteKentenUniversity CollegeHospital, CancerClinical TrialsUnit, London,NW1 2PG, UKPhD[email protected]hs.net3LouiseJonesMarie CuriePalliative CareResearchDepartment,Division ofPsychiatry,University CollegeLondon,Maple House,149 TottenhamCourt Rd, LondonW1T 7NFMB BS, FRCP[email protected]ac.uk4FaithGibsonGreat OrmondStreet Hospital forChildren NHSFoundation TrustGreat OrmondStreetLondon WC1N3JH andUniversity ofSurreyPhD[email protected].nhs.uk1
#AuthorAffiliationPrimary AcademicdegreeEmail address5SusiePearceUniversity CollegeHospital, Dept ofOncology,London, NW12PG, UKMSc[email protected]mail.com6MaryFlatleySt JosephHospiceMare St, LondonE8 4SAMSc[email protected]g.uk7RachaelHoughUniversity CollegeHospital, Childrenand YoungPeoples CancerService, London,NW1 2PG, UKMD[email protected]h.nhs.uk8L.Caroline StirlingCentral and NorthWest LondonNHS Trust,Camden, IslingtonELiPSe andUCLH & HCAPalliative CareService, NW12PUMB.BS[email protected]s.net9RachelTaylorUniversity CollegeHospital, CancerClinical TrialsUnit, London,NW1 2PG, UKPhD[email protected]10GeoffWongUniversity ofOxford, NuffieldDepartment ofPrimary CareHealth Sciences,Oxford, OX2 6GGMD(Res)[email protected]m11JeremyWhelanUniversity CollegeHospital, Dept ofOncology,London, NW12PG, UKMD[email protected]h.nhs.uk*These authors contributedequallyCorrespondence:Jeremy Whelan[email protected]2
Research support:Marie Curie Cancer Care grant referenceA15722Key words:Qualitative, end of life care, palliativecare, systematic review, narrativesynthesis3
AbstractPurposeTo review the qualitative literature on experiences of and preferences forend of life care of people with cancer aged 16-40 years (young adults) and theirinformal carers.MethodsA systematic review using narrative synthesis of qualitative studies usingthe 2006 UK Economic and Social Research Council research methods programmeguidance. Seven electronic bibliographic databases, two clinical trials databases,and three relevant theses databases were searched from January 2004 to October2015.ResultsEighteen articles were included from twelve countries. The selected studiesincluded at least 5% of their patient sample within the age range 16-40 years. Thestudies were heterogeneous in their aims, focus and sample but described differentaspects of end-of-life care for people with cancer. Positive experiences includedfacilitating adaptive coping and receiving palliative home care whilst negativeexperiences were loss of ‘self’ and non-facilitative services and environment.

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Term
Fall
Professor
DavidNolan

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