Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis
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 res...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Journal article |
| Language: | English |
| Published: |
Mary Ann Liebert
2017
|
| _version_ | 1797062076708945920 |
|---|---|
| author | Ngwenya, N Kenten, C Jones, L Gibson, F Pearce, S Flatley, M Hough, R Stirling, L Taylor, R Wong, G Whelan, J |
| author_facet | Ngwenya, N Kenten, C Jones, L Gibson, F Pearce, S Flatley, M Hough, R Stirling, L Taylor, R Wong, G Whelan, J |
| author_sort | Ngwenya, N |
| collection | OXFORD |
| description | 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. |
| first_indexed | 2024-03-06T20:40:23Z |
| format | Journal article |
| id | oxford-uuid:3417fda6-39bf-4f4d-a857-213fe420ad88 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-06T20:40:23Z |
| publishDate | 2017 |
| publisher | Mary Ann Liebert |
| record_format | dspace |
| spelling | oxford-uuid:3417fda6-39bf-4f4d-a857-213fe420ad882022-03-26T13:23:50ZExperiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative SynthesisJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:3417fda6-39bf-4f4d-a857-213fe420ad88EnglishSymplectic Elements at OxfordMary Ann Liebert2017Ngwenya, NKenten, CJones, LGibson, FPearce, SFlatley, MHough, RStirling, LTaylor, RWong, GWhelan, JTo 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. |
| spellingShingle | Ngwenya, N Kenten, C Jones, L Gibson, F Pearce, S Flatley, M Hough, R Stirling, L Taylor, R Wong, G Whelan, J Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis |
| title | Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis |
| title_full | Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis |
| title_fullStr | Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis |
| title_full_unstemmed | Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis |
| title_short | Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis |
| title_sort | experiences and preferences for end of life care for young adults with cancer and their informal carers a narrative synthesis |
| work_keys_str_mv | AT ngwenyan experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT kentenc experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT jonesl experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT gibsonf experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT pearces experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT flatleym experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT houghr experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT stirlingl experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT taylorr experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT wongg experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis AT whelanj experiencesandpreferencesforendoflifecareforyoungadultswithcancerandtheirinformalcarersanarrativesynthesis |