title: Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.
abstract: To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.
authors.affiliation: 1 Cancer Clinical Trials Unit, University College Hospital , London, United Kingdom .
authors.forename: Nothando
authors.initials: N
authors.lastname: Ngwenya
authors.affiliation: 1 Cancer Clinical Trials Unit, University College Hospital , London, United Kingdom .
authors.forename: Charlotte
authors.initials: C
authors.lastname: Kenten
authors.affiliation: 2 Division of Psychiatry, Palliative Care Research Department, University College London , London, United Kingdom .
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.affiliation: 3 Centre for Outcomes and Experiences Research in Children's Health, Great Ormond Street Hospital for Children NHS Foundation Trust , London, United Kingdom .|4 School of Health Sciences, University of Surrey , London, United Kingdom .
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
authors.affiliation: 5 Department of Oncology, University College Hospital , London, United Kingdom .
authors.forename: Susie
authors.initials: S
authors.lastname: Pearce
authors.affiliation: 6 St. Joseph Hospice , London, United Kingdom .
authors.forename: Mary
authors.initials: M
authors.lastname: Flatley
authors.affiliation: 7 Children and Young Peoples Cancer Service, University College Hospital , London, United Kingdom .
authors.forename: Rachael
authors.initials: R
authors.lastname: Hough
authors.affiliation: 8 Camden, Islington ELiPSe and UCLH & HCA Palliative Care Service, Central and North West London NHS Trust , London, United Kingdom .
authors.forename: L Caroline
authors.initials: LC
authors.lastname: Stirling
authors.affiliation: 5 Department of Oncology, University College Hospital , London, United Kingdom .
authors.forename: Rachel M
authors.initials: RM
authors.lastname: Taylor
authors.affiliation: 9 Nuffield Department of Primary Care Health Sciences, University of Oxford , Oxford, United Kingdom .
authors.forename: Geoff
authors.initials: G
authors.lastname: Wong
authors.affiliation: 5 Department of Oncology, University College Hospital , London, United Kingdom .
authors.forename: Jeremy
authors.initials: J
authors.lastname: Whelan
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers; D003142:Communication; D005190:Family; D006699:Home Care Services; D006801:Humans; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care; D057240:Patient Preference; D018802:Patient-Centered Care; D010817:Physician-Patient Relations; D036301:Qualitative Research; D013727:Terminal Care; D055815:Young Adult
keywords: end-of-life care; narrative synthesis; palliative care; qualitative; systematic review