TY - JOUR
T1 - 'My life is a mess but I cope'
T2 - An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition
AU - Bristowe, Katherine
AU - Braybrook, Debbie
AU - Scott, Hannah M
AU - Coombes, Lucy
AU - Harðardóttir, Daney
AU - Roach, Anna
AU - Ellis-Smith, Clare
AU - Bluebond-Langner, Myra
AU - Fraser, Lorna
AU - Downing, Julia
AU - Murtagh, Fliss
AU - Harding, Richard
N1 - Funding Information:
The C-POS study is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. Fliss Murtagh is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed are those of the author[s] and not necessarily those of the UK NIHR or the Department of Health and Social Care. The Children’s Palliative care Outcome Scale (C-POS) Study Steering Group members are: AK Anderson, Jo Bayly, Lydia Bate, Myra Bluebond-Langner, Debbie Box, Katherine Bristowe, Rachel Burman, Lizzie Chambers, Lucy Coombes, Alan Craft, Fin Craig, Aislinn Delaney, Jonathan Downie, Julia Downing, Clare Ellis-Smith, Bobbie Farsides, Sara Fovargue, Lorna Fraser, Jane Green, Jay Halbert, Julie Hall-Carmichael, Irene Higginson, Michelle Hills, Mevhibe Hocaoglu, Vanessa Holme, Gill Hughes, Jo Laddie, Angela Logun, Eve Malam, Steve Marshall, Linda Maynard, Andrina McCormack, Catriona McKeating, Lis Meates, Fliss Murtagh, Eve Namisango, Veronica Neefjes, Cheryl Norman, Sue Picton, Christina Ramsenthaler, Anna Roach, Ellen Smith, Michelle Ward and Mark Whiting.
Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: CPOS was funded by a European Research Council’s Consolidator Award (grant ID: 772635) with the overall aim to develop and validate a person-centred outcome measure for children, young people, and their families affected by life-limiting and life-threatening condition.
Publisher Copyright:
© The Author(s) 2024.
PY - 2024/3
Y1 - 2024/3
N2 - BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child.AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language.SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations.RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions.CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
AB - BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child.AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language.SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations.RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions.CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
UR - http://www.scopus.com/inward/record.url?scp=85186922282&partnerID=8YFLogxK
U2 - 10.1177/02692163241233977
DO - 10.1177/02692163241233977
M3 - Article
C2 - 38439152
SN - 0269-2163
VL - 38
SP - 379
EP - 388
JO - Palliative Medicine
JF - Palliative Medicine
IS - 3
ER -
