Published literature
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview studyCoombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Harding R · Eur J Pediatr · 2022
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner PerspectivesScott H, Coombes L, Braybrook D, Roach A, Harardottir D, Bristowe K, Ellis-Smith C, Chambers L, Bluebond-Langner M, Farsides B, Murtagh F, Harding R · Palliative Medicine · 2022
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carersCoombes L, Braybrook D, Hardardottir D, Scott H, Bristowe K, Ellis-Smith C, Fraser L, Downing J, Bluebond-Langner M, Murtagh F, Harding R · Palliative Medicine · 2024
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family MembersCoombes L, Harðardóttir D, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Patient · 2023
Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK)Braybrook D, Coombes L, Harardottir D, Scott H, Bristowe K, Ellis-Smith C, Roach A, Ramsenthaler C, Bluebond-Langner M, Downing J, Murtagh F, Fraser L, Harding R · Palliative care and social practice · 2024
''If they knew what I thought was important that would help a lot more'': Methods for involving children and young people with life-limiting and life-threatening conditions in development of a paediatric palliative care outcome measureBraybrook D, Coombes L, Roach A, Scott H, Haroardottir D, Bristowe K, Ellis-Smith C, Hills M, Maynard L, Anderson A, Namisango E, Higginson I, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2022
‘I’m tired of justifying why my life has stopped’: A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavementHarrop E, Abbott Z, Hopewell-Kelly N, Goss S, Byrne C, Bayliss J, Jones K, Clabburn O, Warren R, Penny A, Leadbitter H · Palliative Care and Social Practice · 2026
Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available toolsMayland C, Sunderland K, Cooper M, Taylor P, Powell P, Zeigler L, Cox V, Gilman C, Turner N, Flemming K, Fraser L · Palliat Med · 2022
'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening conditionBristowe K, Braybrook D, Scott H, Coombes L, Harðardóttir D, Roach A, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Murtagh F, Harding R · Palliat Med · 2024
'My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own ConditionBristowe K, Braybrook D, Scott H, Coombes L, Harardottir D, Roach A, Ellis-Smith C, Fraser L, Downing J, Murtagh F, Harding R · Palliative Medicine · 2023
Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: Results from a London cohort study and international surveyVeldhuijzen Van Zanten S, Van Meerwijk C, Jansen M, Twisk J, Anderson A, Coombes L, Breen M, Hargrave O, Hemsley J, Craig F, Cruz O, Kaspers G, Van Vuurden D, Hargrave D · Neuro-Oncology · 2016
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative studyPapworth A, Hackett J, Beresford B, Murtagh F, Weatherly H, Hinde S, Bedendo A, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hain R, Subramanian G, Haynes A, Fraser L · BMC Palliative Care · 2023
The Chameleon Project: A children's end of life care quality improvement projectWolff A, Dorsett C, Haynes S, Whitehouse W, Clements H, Griffin H, Chhaochharia A, Connolly A, Kelly N, Turnbull J, Deorukker S, Hill S, Batey N, Douglas E, Sheikh N, Bifani E, Lovegrove S, Webb K, Manning J · Developmental Medicine and Child Neurology · 2020
The Impact of COVID-19 on Palliative Care for Children Within the UKScott H, Coombes L, Braybrook D, Roach A, Harardottir D, Bristowe K, Ellis-Smith C, Bluebond-Langner M, Farsides B, Murtagh F, Fraser L, Harding R · Palliative Medicine · 2022
Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illnessNamisango E, Friedel M, Yurdusen S, Alrjoub W, Braybrook D, Alarjeh G, Roach A, Boufkhed S, Farsides B, Coombes L, Harding R · Palliative medicine · 2025
Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in ChildrenBergstraesser E, Thienprayoon R, Brook L, Fraser L, Hynson J, Rosenberg A, Snaman J, Weaver M, Widger K, Zernikow B, Jones C, Schlögl M · J Palliat Med · 2021
What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholdersScott H, Coombes L, Braybrook D, Hardardottir D, Roach A, Bristowe K, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Ellis-Smith C, Harding R · Palliative Medicine · 2024
What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and ParentsBraybrook D, Coombes L, Scott H, Harardottir D, Roach A, Bariuan J, Ellis-Smith C, Downing J, Murtagh F, Bluebond-Langner M, Fraser L, Harding R, Bristowe K · The patient · 2025
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