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Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.
Published in:
2020
By:
- Sampson, Elizabeth L.;
- Anderson, Janet E.;
- Candy, Bridget;
- Davies, Nathan;
- Ellis‐Smith, Clare;
- Gola, Anna;
- Harding, Richard;
- Kenten, Charlotte;
- Kupeli, Nuriye;
- Mead, Simon;
- Moore, Kirsten J.;
- Omar, Rumana Z.;
- Sleeman, Katherine E.;
- Stewart, Robert;
- Ward, Jane;
- Warren, Jason D.;
- Evans, Catherine J.;
- Ellis-Smith, Clare
Publication type:
journal article
Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools.
Published in:
BMC Palliative Care, 2021, v. 20, n. 1, p. 1, doi. 10.1186/s12904-021-00845-9
By:
- Ellis-Smith, Clare;
- Tunnard, India;
- Dawkins, Marsha;
- Gao, Wei;
- Higginson, Irene J.;
- Evans, Catherine J.;
- on behalf of SPACE;
- Ellis-Smith;
- Yi;
- Gao;
- Norton;
- Marshall;
- Banerjee;
- Goodman;
- Higginson;
- Banerjee, Sube;
- Goodman, Claire;
- Maddocks, Matthew;
- Norton, Christine;
- Seamark, David
Publication type:
Article
Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools.
Published in:
BMC Palliative Care, 2021, v. 20, n. 1, p. 1, doi. 10.1186/s12904-021-00845-9
By:
- Ellis-Smith, Clare;
- Tunnard, India;
- Dawkins, Marsha;
- Gao, Wei;
- Higginson, Irene J.;
- Evans, Catherine J.;
- on behalf of SPACE;
- Ellis-Smith;
- Yi;
- Gao;
- Norton;
- Marshall;
- Banerjee;
- Goodman;
- Higginson;
- Banerjee, Sube;
- Goodman, Claire;
- Maddocks, Matthew;
- Norton, Christine;
- Seamark, David
Publication type:
Article
A systems approach to integration of military operations and law enforcement investigations: Toward a unified forensic intelligence model.
Published in:
Wiley Interdisciplinary Reviews: Forensic Science, 2020, v. 2, n. 2, p. 1, doi. 10.1002/wfs2.1358
By:
- Wilson, Lauren E.;
- Kessler, Michael P.;
- Ellis‐Smith, James;
- Robertson, James
Publication type:
Article
Co-design of a theory-based implementation plan for a holistic eHealth assessment and decision support framework for people with dementia in care homes.
Published in:
Digital Health, 2023, v. 9, p. 1, doi. 10.1177/20552076231211118
By:
- Gillam, Juliet;
- Evans, Catherine;
- Aworinde, Jesutofunmi;
- Ellis-Smith, Clare;
- Ross, Jamie;
- Davies, Nathan
Publication type:
Article
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.
Published in:
European Journal of Pediatrics, 2022, v. 181, n. 10, p. 3739, doi. 10.1007/s00431-022-04566-w
By:
- Coombes, Lucy;
- Braybrook, Debbie;
- Roach, Anna;
- Scott, Hannah;
- Harðardóttir, Daney;
- Bristowe, Katherine;
- Ellis-Smith, Clare;
- Bluebond-Langner, Myra;
- Fraser, Lorna K.;
- Downing, Julia;
- Farsides, Bobbie;
- Murtagh, Fliss E. M.;
- Harding, Richard;
- C-POS
Publication type:
Article
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.
Published in:
Palliative Medicine, 2024, v. 38, n. 6, p. 644, doi. 10.1177/02692163241248735
By:
- Coombes, Lucy;
- Braybrook, Debbie;
- Harðardóttir, Daney;
- Scott, Hannah May;
- Bristowe, Katherine;
- Ellis-Smith, Clare;
- Fraser, Lorna K;
- Downing, Julia;
- Bluebond-Langner, Myra;
- Murtagh, Fliss EM;
- Harding, Richard
Publication type:
Article
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 stakeholders
Published in:
Palliative Medicine, 2024, v. 38, n. 4, p. 471, doi. 10.1177/02692163241234797
By:
- Scott, Hannah May;
- Coombes, Lucy;
- Braybrook, Debbie;
- Harðardóttir, Daney;
- Roach, Anna;
- Bristowe, Katherine;
- Bluebond-Langner, Myra;
- Fraser, Lorna K;
- Downing, Julia;
- Farsides, Bobbie;
- Murtagh, Fliss EM;
- Ellis-Smith, Clare;
- Harding, Richard
Publication type:
Article
'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 condition.
Published in:
Palliative Medicine, 2024, v. 38, n. 3, p. 379, doi. 10.1177/02692163241233977
By:
- Bristowe, Katherine;
- Braybrook, Debbie;
- Scott, Hannah M;
- Coombes, Lucy;
- Harðardóttir, Daney;
- Roach, Anna;
- Ellis-Smith, Clare;
- Bluebond-Langner, Myra;
- Fraser, Lorna;
- Downing, Julia;
- Murtagh, Fliss;
- Harding, Richard
Publication type:
Article
Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.
Published in:
Palliative Medicine, 2023, v. 37, n. 10, p. 1509, doi. 10.1177/02692163231205126
By:
- Coombes, Lucy;
- Harðardóttir, Daney;
- Braybrook, Debbie;
- Scott, Hannah May;
- Bristowe, Katherine;
- Ellis-Smith, Clare;
- Fraser, Lorna K;
- Downing, Julia;
- Bluebond-Langner, Myra;
- Murtagh, Fliss EM;
- Harding, Richard
Publication type:
Article
Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.
Published in:
Palliative Medicine, 2023, v. 37, n. 9, p. 1434, doi. 10.1177/02692163231194202
By:
- Kishino, Megumi;
- Koffman, Jonathan;
- Nagatomi, Hiroaki;
- Yuasa, Misuzu;
- Ellis-Smith, Clare
Publication type:
Article
Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.
Published in:
Palliative Medicine, 2023, v. 37, n. 6, p. 856, doi. 10.1177/02692163231165101
By:
- Scott, Hannah May;
- Coombes, Lucy;
- Braybrook, Debbie;
- Roach, Anna;
- Harðardóttir, Daney;
- Bristowe, Katherine;
- Ellis-Smith, Clare;
- Downing, Julia;
- Murtagh, Fliss EM;
- Farsides, Bobbie;
- Fraser, Lorna K;
- Bluebond-Langner, Myra;
- Harding, Richard
Publication type:
Article
Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review.
Published in:
Palliative Medicine, 2022, v. 36, n. 3, p. 462, doi. 10.1177/02692163211068282
By:
- Kishino, Megumi;
- Ellis-Smith, Clare;
- Afolabi, Oladayo;
- Koffman, Jonathan
Publication type:
Article
Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study.
Published in:
Palliative Medicine, 2021, v. 35, n. 5, p. 962, doi. 10.1177/02692163211004403
By:
- Hodiamont, Farina;
- Hock, Helena;
- Ellis-Smith, Clare;
- Evans, Catherine;
- de Wolf-Linder, Susanne;
- Jünger, Saskia;
- Diehl-Schmid, Janine;
- Burner-Fritsch, Isabel;
- Bausewein, Claudia
Publication type:
Article
Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.
Published in:
Palliative Medicine, 2018, v. 32, n. 1, p. 143, doi. 10.1177/0269216317738161
By:
- Kane, Pauline M.;
- Ellis-Smith, Clare I.;
- Daveson, Barbara A.;
- Ryan, Karen;
- Mahon, Niall G.;
- McAdam, Brendan;
- McQuillan, Regina;
- Tracey, Cecelia;
- Howley, Christine;
- O’Gara, Geraldine;
- Raleigh, Caroline;
- Higginson, Irene J.;
- Murtagh, Fliss E. M.;
- Koffman, Jonathan
Publication type:
Article
Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia.
Published in:
Palliative Medicine, 2017, v. 31, n. 7, p. 651, doi. 10.1177/0269216316675096
By:
- Ellis-Smith, Clare;
- Evans, Catherine J.;
- Murtagh, Fliss E. M.;
- Henson, Lesley A.;
- Firth, Alice M.;
- Higginson, Irene J.;
- Daveson, Barbara A.
Publication type:
Article
Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review.
Published in:
Health & Quality of Life Outcomes, 2023, v. 21, n. 1, p. 1, doi. 10.1186/s12955-023-02143-9
By:
- Scott, Hannah May;
- Braybrook, Debbie;
- Harðardóttir, Daney;
- Ellis-Smith, Clare;
- Harding, Richard;
- On behalf of C-POS;
- Anderson, AK;
- Bayly, Jo;
- Bate, Lydia;
- Bluebond-Langner, Myra;
- Box, Debbie;
- Bristowe, Katherine;
- Burman, Rachel;
- Chambers, Lizzie;
- Coombes, Lucy;
- Craft, Alan;
- Craig, Fin;
- Delaney, Aislinn;
- Downie, Jonathan;
- Downing, Julia
Publication type:
Article
Co-design of a theory-based implementation plan for a holistic eHealth assessment and decision support framework for people with dementia in care homes.
Published in:
Digital Health, 2023, p. 1, doi. 10.1177/20552076231211118
By:
- Gillam, Juliet;
- Evans, Catherine;
- Aworinde, Jesutofunmi;
- Ellis-Smith, Clare;
- Ross, Jamie;
- Davies, Nathan
Publication type:
Article
The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers.
Published in:
PLoS ONE, 2014, v. 9, n. 5, p. 1, doi. 10.1371/journal.pone.0095523
By:
- Daveson, Barbara A.;
- Harding, Richard;
- Shipman, Cathy;
- Mason, Bruce L.;
- Epiphaniou, Eleni;
- Higginson, Irene J.;
- Ellis-Smith, Clare;
- Henson, Lesley;
- Munday, Dan;
- Nanton, Veronica;
- Dale, Jeremy R.;
- Boyd, Kirsty;
- Worth, Allison;
- Barclay, Stephen;
- Donaldson, Anne;
- Murray, Scott
Publication type:
Article
Co‐Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED‐Care Framework.
Published in:
Health Expectations, 2024, v. 27, n. 5, p. 1, doi. 10.1111/hex.70011
By:
- Davies, Nathan;
- Sampson, Elizabeth L.;
- Aworinde, Jesutofunmi;
- Gillam, Juliet;
- Kenten, Charlotte;
- Moore, Kirsten;
- Phillips, Bethan;
- Harvey, Catherine;
- Anderson, Janet;
- Ward, Jane;
- Evans, Catherine J.;
- Ellis‐Smith, Clare
Publication type:
Article
Co‐design of the EMBED‐Care Framework as an intervention to enhance shared decision‐making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study
Published in:
Health Expectations, 2024, v. 27, n. 1, p. 1, doi. 10.1111/hex.13987
By:
- Aworinde, Jesutofunmi;
- Evans, Catherine J.;
- Gillam, Juliet;
- Ramsenthaler, Christina;
- Davies, Nathan;
- Ellis‐Smith, Clare
Publication type:
Article
Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders.
Published in:
Age & Ageing, 2016, v. 45, n. 6, p. 863, doi. 10.1093/ageing/afw124
By:
- BONE, ANNA E.;
- MORGAN, MYFANWY;
- MADDOCKS, MATTHEW;
- SLEEMAN, KATHERINE E.;
- WRIGHT, JULIET;
- TAHERZADEH, SHAMIM;
- ELLIS-SMITH, CLARE;
- HIGGINSON, IRENE J.;
- EVANS, CATHERINE J.
Publication type:
Article
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 Members.
Published in:
Patient, 2023, v. 16, n. 5, p. 473, doi. 10.1007/s40271-023-00627-w
By:
- Coombes, Lucy;
- Harðardóttir, Daney;
- Braybrook, Debbie;
- Roach, Anna;
- Scott, Hannah;
- Bristowe, Katherine;
- Ellis-Smith, Clare;
- Downing, Julia;
- Bluebond-Langner, Myra;
- Fraser, Lorna K.;
- Murtagh, Fliss E. M.;
- Harding, Richard
Publication type:
Article
Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.
Published in:
Milbank Quarterly, 2019, v. 97, n. 1, p. 113, doi. 10.1111/1468-0009.12373
By:
- EVANS, CATHERINE J.;
- ISON, LUCY;
- ELLIS‐SMITH, CLARE;
- NICHOLSON, CAROLINE;
- COSTA, ALESSIA;
- OLUYASE, ADEJOKE O.;
- NAMISANGO, EVE;
- BONE, ANNA E.;
- BRIGHTON, LISA JANE;
- YI, DEOKHEE;
- COMBES, SARAH;
- BAJWAH, SABRINA;
- GAO, WEI;
- HARDING, RICHARD;
- ONG, PAUL;
- HIGGINSON, IRENE J.;
- MADDOCKS, MATTHEW
Publication type:
Article
How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?--A systematic review.
Published in:
Alzheimer's & Dementia: Translational Research & Clinical Interventions, 2022, v. 8, n. 1, p. 1, doi. 10.1002/trc2.12304
By:
- Aworinde, Jesutofunmi;
- Ellis-Smith, Clare;
- Gillam, Juliet;
- Roche, Moïse;
- Coombes, Lucy;
- Yorganci, Emel;
- Evans, Catherine J.
Publication type:
Article
A collaborative approach in dementia care to improve clinical effectiveness and priorities for research through audit.
Published in:
International Journal of Palliative Nursing, 2019, v. 25, n. 12, p. 588, doi. 10.12968/ijpn.2019.25.12.588
By:
- Kinley, Julie;
- Ellis-Smith, Clare;
- Hurt, Michael;
- McIvor, Karen;
- Evans, Catherine J
Publication type:
Article
Characteristics and mortality rates among patients requiring intermediate care: a national cohort study using linked databases.
Published in:
2021
By:
- Evans, Catherine J.;
- Potts, Laura;
- Dalrymple, Ursula;
- Pring, Andrew;
- Verne, Julia;
- Higginson, Irene J.;
- Gao, Wei;
- on behalf of SPACE;
- Banerjee, Sube;
- Dawkins, Marsha;
- Ellis-Smith, Clare;
- Goodman, Claire;
- Norton, Christine;
- Maddocks, Mathew;
- Seamark, David;
- SPACE
Publication type:
journal article
Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.
Published in:
Quality of Life Research, 2021, v. 30, n. 7, p. 1803, doi. 10.1007/s11136-021-02814-4
By:
- Coombes, L.;
- Bristowe, K.;
- Ellis-Smith, C.;
- Aworinde, J.;
- Fraser, L. K.;
- Downing, J.;
- Bluebond-Langner, M.;
- Chambers, L.;
- Murtagh, F. E. M.;
- Harding, R.
Publication type:
Article
How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem.
Published in:
PLoS ONE, 2018, v. 13, n. 7, p. 1, doi. 10.1371/journal.pone.0200240
By:
- Ellis-Smith, Clare;
- Higginson, Irene J.;
- Daveson, Barbara A.;
- Henson, Lesley A.;
- Evans, Catherine J.;
- null, null
Publication type:
Article
Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review.
Published in:
2016
By:
- Ellis-Smith, Clare;
- Evans, Catherine J.;
- Bone, Anna E.;
- Henson, Lesley A.;
- Dzingina, Mendwas;
- Kane, Pauline M.;
- Higginson, Irene J.;
- Daveson, Barbara A.;
- BuildCARE
Publication type:
journal article
The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure.
Published in:
2015
By:
- Kane, P.;
- Murtagh, F.;
- Ryan, K.;
- Mahon, N.;
- McAdam, B.;
- McQuillan, R.;
- Ellis-Smith, C.;
- Tracey, C.;
- Howley, C.;
- Raleigh, C.;
- O'Gara, G.;
- Higginson, I.;
- Daveson, B.;
- Kane, P M;
- Murtagh, F E M;
- Mahon, N G;
- Higginson, I J;
- Daveson, B A
Publication type:
journal article
Preferences and priorities to manage clinical uncertainty for older people with frailty and multimorbidity: a discrete choice experiment and stakeholder consultations.
Published in:
2021
By:
- Tunnard, India;
- Yi, Deokhee;
- Ellis-Smith, Clare;
- Dawkins, Marsha;
- Higginson, Irene J.;
- Evans, Catherine J.
Publication type:
journal article

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