Dr Stephanie Sivell
Marie Curie Research Associate
- sivells2@cardiff.ac.uk
- +44 (0)29 2068 7198
- Marie Curie Palliative Care Research Centre, Neuadd Meirionnydd
- Available for postgraduate supervision
Overview
Overview
I am an experienced researcher in both quantitative and qualitative methods, and analysis in health-related research. My research interests include: health psychology; health communication; decision-making; design, development and evaluation of theory-based complex interventions; healthcare improvement; mixed methods evaluation; palliative and supportive care; cancer and chronic conditions.
Biography
Education & Qualifications
2014: Ph.D by Published Works: "Supporting decision-making using a theory based intervention: application of an extended Theory of Planned Behaviour and the Common Sense Model of Illness Representations to support women choosing surgery for early breast cancer", Cardiff University
2005: M.Phil (Occupational & Health Psychology): “Combined Effects of Occupational Health Hazards”, University of Wales, Cardiff
1999: BA (Hons) Psychology (2:1), University of Wales, Cardiff
Training & Development
2008: Internet-Based Health Psychology Interventions: Maximising their Potential; Synergy 2008 Workshop: European Heath Psychology Society
2007: Dartmouth Summer Institute for Informed Patient Choice; Dartmouth College, NH, U.S.A
2007: Psychology of Decision Making; Department of Psychology, Queen’s University, Canada
2007: Advanced Quantitative Research Methods; Cardiff School of Social Sciences, Cardiff University
Career Overview
2011 - Present: Marie Curie Research Associate; Marie Curie Palliative Care Research Centre, Division of Population Medicine, School of Medicine, Cardiff University
Professional memberships
External Memberships
- British Psychological Society
- Internal Shared Decision Making Society (Young Scientific Associate)
- Fellow of the Dartmouth Summer Institute for Informed Patient Choice
Internal Memberships
- Patient Centred Care group, Division of Population Medicine, Cardiff University School of Medicine
Academic positions
2011 - Present: Marie Curie Research Associate; Marie Curie Palliative Care Research Centre, Division of Population Medicine, School of Medicine, Cardiff University
2006 - 2011: Research Associate; Department of Primary Care and Public Health, School of Medicine, Cardiff University
2006: Project Officer (Secondment); Department of General Practice, School of Medicine, Cardiff University
2004 - 2006: Research Assistant; Cancer Genetics Services for Wales, Institute of Medical Genetics, Cardiff University
2001 - 2003: Research Assistant; Department of Geriatric Medicine, University of Wales College of Medicine
2001: Research Assistant; Academic Unit of Psychiatry and Behavioural Sciences, School of Medicine, University of Leeds
2000-2001: MPhil Studentship; Centre for Occupational and Health Psychology, University of Wales, Cardiff
1999-2000: Research Assistant; Centre for Occupational and Health Psychology, University of Wales, Cardiff
Committees and reviewing
Breast Cancer Now, Grant Commitee Member (2021 - present)
Equality, Diversity and Inclusivity, Division of Population Medicine Committee: Division of Population, School of Medicine (Deputy Lead)
School of Medicine Equality, Diversity and Inclusivity Commitee: Cardiff University School of Medicine (Member)
Journal Reviewer: Social Science and Medicine, Patient Education and Counseling, Health Expectations
Grant Reviewer: Marie Curie, Breast Cancer Now
Publications
2022
- Walker, L. and Sivell, S. 2022. Breaking bad news in a cross-language context; a qualitative study to develop a set of culturally and linguistically appropriate phrases and techniques with Zulu speaking cancer patients. Patient Education and Counseling 105(7), pp. 2081-2088. (10.1016/j.pec.2022.01.007)
- Mazzaschi, F., Sivell, S., Byrne, A., Brain, K. and Powell, J. 2022. 43 Cognitive changes experienced by patients with high-grade glioma after radiotherapy: a mixed method, public survey. Presented at: 2022 Marie Curie Research Conference Improving End of Life, Virtual, 30 January - 04 February 2022, Vol. 12. Vol. Supple. BMJ Publishing Group pp. A17-A18., (10.1136/spcare-2021-MCRC.43)
- Mazzaschi, F., Peddle, S., Seddon, K., Sivell, S., Byrne, A. and Nelson, A. 2022. 53 Incorporation and evaluation of the patient and public involvement national standards within doctoral research focussed on the improvement of quality of life of patients with high-grade glioma. Presented at: 2022 Marie Curie Research Conference Improving End of Life, Virtual, 30 January - 04 February 2022, Vol. 12. Vol. Supple. BMJ Publishing Group pp. A22., (10.1136/spcare-2021-MCRC.53)
- Byrne, A. et al. 2022. Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers pub2. Cochrane Library 2022(1), article number: CD013440. (10.1002/14651858.CD013440.pub2)
- Retzer, A. et al. 2022. Development of a core outcome set and identification of patient-reportable outcomes for primary brain tumour trials: protocol for the COBra study. BMJ Open
2021
- Harrop, E. et al. 2021. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine 35(10), pp. 1985-1997. (10.1177/02692163211043372)
- Mazzaschi, F., Sivell, S., Byrne, A., Brain, K., Powell, J. and Nelson, A. 2021. Everyday memory and processing alteration in patients with high-grade glioma after radiotherapy: a mixed method, public survey. Presented at: 17th World Congress of the European Association for Palliative Care (EAPC 2021), Virtual, 06-08 October 2021, Vol. 35. Vol. Supple. SAGE Publications pp. 76-77., (10.1177/02692163211035909)
- Harrop, E. et al. 2021. End of life and bereavement experiences during the COVID-19 pandemic: interim results from a national survey of bereaved people. Presented at: Palliative Care Congress 2021, Virtual, 25-26 March 2021, Vol. 11. Vol. Supple. BMJ Publishing Group pp. A3., (10.1136/spcare-2021-PCC.6)
2020
- Longo, M. et al. 2020. Holistic care: the clinical nurse specialist’s role in advanced lung cancer patients. Palliative Medicine 34(Supple), pp. 79-79. (10.1177/0269216320958098)
- Nelson, A. et al. 2020. Chemotherapy decision-making in advanced lung cancer: a prospective qualitative study. BMJ Supportive & Palliative Care (10.1136/bmjspcare-2020-002395)
- Harrop, E. et al. 2020. The impacts and effectiveness of support for people bereaved through advanced illness: a systematic review and thematic synthesis. Palliative Medicine 34(7), pp. 871-888. (10.1177/0269216320920533)
- Farnell, D. et al. 2020. The ALERT-B questionnaire: a screening tool for the detection of gastroenterological late effects after radiotherapy for prostate cancer. Clinical and Translational Radiation Oncology 21, pp. 98-103. (10.1016/j.ctro.2020.02.002)
- Harrop, E. et al. 2020. Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care. BMC Palliative Care 19, article number: 29. (10.1186/s12904-020-0532-4)
2019
- Byrne, A. et al. 2019. Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers. Cochrane Database of Systematic Reviews 2019(9), article number: CD013440. (10.1002/14651858.CD013440)
- Hopewell-Kelly, N. et al. 2019. Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper. BMJ Supportive & Palliative Care 9(2), pp. 219-224. (10.1136/bmjspcare-2015-000889)
- Sivell, S. et al. 2019. Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper. BMJ Supportive & Palliative Care 9, article number: e14. (10.1136/bmjspcare-2015-000892)
2018
- Morgan, F. et al. 2018. 54 Interventions and support for people bereaved through advanced progressive illness: a mixed-methods systematic review. BMJ Supportive and Palliative Care 8(3), pp. 380-381. (10.1136/bmjspcare-2018-mariecurie.54)
- Longo, M. et al. 2018. 30 Consensus and consistency: development of a core outcome set for evaluating bereavement support in palliative care [Poster abstract]. BMJ Supportive and Palliative Care 8(3), article number: 371. (10.1136/bmjspcare-2018-mariecurie.30)
- Seddon, K. et al. 2018. 40 Detailing public involvement (PI) within a study of bereavement support services for adults bereaved through advanced illness [Poster Abstracts]. BMJ Supportive and Palliative Care 8(3), pp. 374-375. (10.1136/bmjspcare-2018-mariecurie.40)
- Baillie, J., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A. and Nelson, A. 2018. Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions. BMC Palliative Care 17, article number: 60. (10.1186/s12904-018-0314-4)
2017
- Harrop, E., Noble, S., Edwards, M., Sivell, S., Moore, B. and Nelson, A. 2017. Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer. Sociology of Health & Illness 39(8), pp. 1448-1464.
- Anagnostou, D. et al. 2017. Development of an intervention to support patients and clinicians with advanced lung cancer when considering systematic anticancer therapy: protocol for the PACT study. BMJ Open 7(7), article number: e015277. (10.1136/bmjopen-2016-015277)
2016
- Woodman, C., Baillie, J. and Sivell, S. 2016. The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence. BMJ Supportive and Palliative Care 6(4), pp. 418-429. (10.1136/bmjspcare-2014-000794)
- Taylor, S. et al. 2016. The three-item ALERT-B questionnaire provides a validated screening tool to detect chronic gastrointestinal symptoms after pelvic radiotherapy in cancer survivors. Clinical Oncology 28(10), pp. e139-e147. (10.1016/j.clon.2016.06.004)
- Harrop, E., Noble, S., Edwards, M., Sivell, S., Moore, B. and Nelson, A. 2016. 'I didn't really understand it, I just thought it'd help': exploring the motivations, understandings and experiences of patients with advanced lung cancer participating in a non-placebo clinical IMP trial. Trials 17(1), article number: 329. (10.1186/s13063-016-1460-8)
- Harrop, E., Godwin, J. v., Sivell, S., Baillie, J., Byrne, A. and Nelson, A. 2016. Palliative and end of life care priority setting partnership (PeolcPSP): Bereavement: experiences, needs and supportive interventions. Project Report.
2015
- Noble, S. I. et al. 2015. A feasibility study to inform the design of a randomised controlled trial to identify the most clinically effective and cost-effective length of Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT). Health Technology Assessment 19(83), pp. 1-94. (10.3310/hta19830)
- Sivell, S., Lidstone, V., Taubert, M., Thompson, C. and Nelson, A. 2015. Identifying the key elements of an education package to up-skill multidisciplinary adult specialist palliative care teams caring for young adults with life-limiting conditions: an online Delphi study. BMJ Supportive & Palliative Care 5(3), pp. 306-315. (10.1136/bmjspcare-2013-000595)
- Durand, M., Witt, J., Joseph-Williams, N. J., Newcombe, R. G., Politi, M. C., Sivell, S. and Elwyn, G. 2015. Minimum standards for the certification of patient decision support interventions. Patient Education and Counseling 98(4), pp. 462-486. (10.1016/j.pec.2014.12.009)
- Woodman, C., Baillie, J. and Sivell, S. 2015. Relatives' preferred place of care at the end-of-life: implications for palliative care in the future. BMJ Supportive and Palliative Care 5, pp. 116-117. (10.1136/bmjspcare-2014-000838.38)
- Sivell, S. et al. 2015. Conducting qualitative research interviews with palliative and end of life care patients in the home setting: reflections and recommendations from an academic palliative care research centre [Conference Abstract]. BMJ Supportive and Palliative Care 5, article number: 117. (10.1136/bmjspcare-2014-000838.40)
- Hopewell-Kelly, N. et al. 2015. The use of social media in a palliative care research centre [Conference Abstract]. BMJ Supportive and Palliative Care 5, article number: 120. (10.1136/bmjspcare-2014-000838.47)
- Best, S. et al. 2015. Research priority setting in palliative and end of life care: the James Lind Alliance approach to consulting patient, carers and clinicians. Presented at: Marie Curie Annual Palliative Care Research Conference 2015, London, UK, 27 March 2015.
- Baillie, J., Nelson, A., Sivell, S. and Noble, S. 2015. Risky recruitment: feasibility of recruiting patients to a cancer associated thrombosis clinical trial - insights from an embedded qualitative study. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10th May 2015. pp. 2307-2312.
- Woodman, C., Baillie, J. and Sivell, S. 2015. Family caregivers' preferences for place of care for patients at the end of life: implications of a systematic review for policy and practice. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 31-32.
- Sivell, S. et al. 2015. Social spaces and singular encounters: challenges to conducting qualitative research interviews in palliative and end of life care in the home setting. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 2529-2534.
- Smith, R. et al. 2015. Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 2529-2534.
- Hopewell-Kelly, N. et al. 2015. Utilising data from social media in palliative care research: developing an ethical framework. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 1121-1128.
2014
- Woodman, C., Baillie, J. and Sivell, S. 2014. Family caregivers' perceptions surrounding place of care for their relatives at the end-of-life and their perspectives on their relatives' chosen place of care. A qualitative systematic review and thematic synthesis.. Presented at: 14th Annual All Wales Palliative Care Conference, Gregynog, Powys, Wales, 6-7 November 2014.
- Joseph-Williams, N. et al. 2014. Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Medical Decision Making 34(6), pp. 699-710. (10.1177/0272989X13501721)
- Woodman, C., Baillie, J. and Sivell, S. 2014. Attitudes of family caregivers towards place or care for their relatives at the end of life: A systematic review and thematic synthesis of the qualitative research. Presented at: Cardiff University Systematic Review Network SysNet Conference 2014, Cardiff, 4 June 2014.
2013
- Lidstone, V., Sivell, S., Taubert, M., Thompson, C. and Nelson, A. 2013. Transition in palliative care study day series. BMJ Supportive & Palliative Care 3(S1), pp. A48-A49. (10.1136/bmjspcare-2013-000591.131)
- Sivell, S., Elwyn, G., Edwards, A. and Manstead, A. S. R. 2013. Factors influencing the surgery intentions and choices of women with early breast cancer: the predictive utility of an extended theory of planned behaviour. BMC Medical Informatics and Decision Making 13, article number: 92. (10.1186/1472-6947-13-92)
- Sivell, S., Elwyn, G., Edwards, A. G. and Manstead, A. S. R. 2013. Factors influencing the surgery intentions and choices of women with early breast cancer: the predictive utility of an extended Theory of Planned Behaviour [abstract]. Psycho-Oncology 22(S1), pp. 12-12. (10.1111/j.1099-1611.2013.03239.x)
- Sivell, S., Lidstone, V., Taubert, M. and Nelson, A. 2013. Free communication FC 12.1 (oral abstract): Educating adult palliative care teams about the needs of transition age young people. What do they need to know?. Presented at: 13th World Congress of the European Association for Palliative Care, Prague, Czech Republic, 30 May - 2 June 2013European Journal of Palliative Care. suppl.. pp. 60.
2012
- Sivell, S. et al. 2012. Increasing readiness to decide and strengthening behavioral intentions: Evaluating the impact of a web-based patient decision aid for breast cancer treatment options (BresDex: www.bresdex.com). Patient Education and Counseling 88(2), pp. 209-217. (10.1016/j.pec.2012.03.012)
- Sivell, S., Marsh, W., Edwards, A. G., Manstead, A. S. R., Clements, A. and Elwyn, G. 2012. Theory-based design and field-testing of an intervention to support women choosing surgery for breast cancer: BresDex. Patient Education and Counseling 86(2), pp. 179-188. (10.1016/j.pec.2011.04.014)
2011
- Elwyn, G., Kreuwel, I., Durand, M., Sivell, S., Joseph-Williams, N. J., Evans, R. and Edwards, A. G. 2011. How to develop web-based decision support interventions for patients: a process map. Patient Education and Counseling 82(2), pp. 260-265. (10.1016/j.pec.2010.04.034)
- Sivell, S., Edwards, A. G., Elwyn, G. and Manstead, A. S. R. 2011. Understanding surgery choices for breast cancer: how might the Theory of Planned Behaviour and the Common Sense Model contribute to decision support interventions?. Health Expectations 14(s1), pp. 6-19. (10.1111/j.1369-7625.2009.00558.x)
- Caldon, L. J. M. et al. 2011. Clinicians' concerns about decision support interventions for patients facing breast cancer surgery options: understanding the challenge of implementing shared decision-making. Health Expectations 14(2), pp. 133-146. (10.1111/j.1369-7625.2010.00633.x)
2009
- Caldon, L. et al. 2009. New technologies to support the decisions of women facing surgical choices for breast cancer: the reactions and concerns of health professionals [Abstract]. Psycho-oncology 18(3), pp. 320. (10.1002/pon.1549)
- Elwyn, G. et al. 2009. Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi). PLoS ONE 4(3), article number: e4705. (10.1371/journal.pone.0004705)
2008
- Edwards, A. G. et al. 2008. Interventions to improve risk communication in clinical genetics: systematic review. Patient Education and Counseling 71(1), pp. 4-25. (10.1016/j.pec.2007.11.026)
- Sivell, S. et al. 2008. How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. Journal of Genetic Counselling 17(1), pp. 30-63. (10.1007/s10897-007-9132-1)
- Iredale, R., Rapport, F., Sivell, S., Jones, W., Edwards, A. G., Gray, J. and Elwyn, G. 2008. Exploring the requirements for a decision aid on familial breast cancer in the UK context: a qualitative study with patients referred to a cancer genetics service. Journal of Evaluation in Clinical Practice 14(1), pp. 110-115. (10.1111/j.1365-2753.2007.00811.x)
2007
- Gaff, C. L. et al. 2007. Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics 15(10), pp. 999-1011. (10.1038/sj.ejhg.5201883)
- Sivell, S., Iredale, R., Gray, J. and Coles, B. M. 2007. Cancer genetic risk assessment for individuals at risk of familial breast cancer. Cochrane Database of Systematic Reviews 2, article number: CD003721. (10.1002/14651858.CD003721.pub2)
2006
- Rapport, F., Iredale, R., Jones, W., Sivell, S., Edwards, A. G., Gray, J. and Elwyn, G. 2006. Decision aids for familial breast cancer: exploring women's views using focus groups. Health Expectations 9(3), pp. 232-244. (10.1111/j.1369-7625.2006.00392.x)
2005
- Brain, K. E. et al. 2005. An exploratory comparison of genetic counselling protocols for HNPCC predictive testing. Clinical Genetics 68(3), pp. 255-261. (10.1111/j.1399-0004.2005.00491.x)
2001
- Smith, A. P., Brice, C. F., Sivell, S., Wadsworth, E. J. K. and Wellens, B. T. 2001. The combined effects of occupational factors on objective measures of performance and health. In: Hanson, M. A. ed. Contemporary Ergonomics 2001. London: Taylor & Francis, pp. 203-208.
- Smith, A. P., Brice, C. F., Sivell, S. and Wellens, B. T. 2001. The combined effects of occupational factors on subjective reports of health. In: Hanson, M. A. ed. Contemporary Ergonomics 2001. London: Taylor & Francis, pp. 197-202.
Teaching
Group Discussion facilitator, Exam question and marking design for Cardiff University School of Medicine BSc Intercalated Route (Population Medicine) 2020 to present (Systematic Reviews)
Exam question and marking design for School of Medicine BSc Intercalated Route (Population Medicine) 2020 to present for Systematic Review question.
Assessor for the Cardiff University School of Medicine BSc Intercalated Route (Clinical Epidemiology), 2014 to present
Small group teaching in SSC Year 1 School of Medicine (Professionalism and Ethics) and C21 Epidemiology / Evidence Based Medicine in Year 3, 2017 to present
Tutor for Practical Research Experience in SSC Year 1, Year 2 & Year 3; School of Medicine, 2017 to present.
Teaching modules and small group teaching on MSc Palliative Medicine, Cardiff University School of Medicine, 2012 to 2018.
Grant Funding
Evaluation of the Implementation of the RCGP & Marie Curie Daffodil Standards. Marie Curie, £69,616 (RDAFFO), 2022-2024 (Co-Chief Investigator)
Value in Health: A Palliative Care Perspective. Welsh Value in Health Care, £50,000, 2022-2023 (Co-Chief Investigator)
The long-term grief experiences and support needs of people bereaved during the Covid-19 pandemic: cohort survey 4th timepoint. Marie Curie Small Grants, £15,000, (MCSGS-21-701), 2022-2023 (Co-Investigator)
Patient Reported Core Outcomes in Brain Tumour Trials: the COBra study. The Brain Tumour Charity, £152,949 2020-2022 (Co-Investigator)
Exploring cancer patients' expectations and experiences of Proton Bean Therapy in the UK. Tenovus Cancer Care iGrant, £29,999, 2020-2021 (Chief Investigator) (Funding redacted due to COVID-19)
An action research project to develop and evaluate a new model of therapy led MDT meetings and integrated care pathways for patients at a specialist cancer treatment centre. Tenovus Cancer Care iGrant, £30,000, 2020-2021 (Co-Investigator) (Funding redacted due to COVID-19)
Improving access to end of life care for Diverse Communities of Cardiff. Marie Curie Hospice, Cardiff and the Vale, Penarth, £6,000. 2018 (Co-Investigator)
Supporting people bereaved through advanced illness: a systematic review of the evidence and development of a core outcome set for bereaved research in palliative care. Marie Curie Cancer Care, £82K, 2016-2018 (Co-Investigator)
PACT: Development of an intervention to support lung cancer Patients and their clinicians when considering systematic Anti-Cancer Therapy. Velindre NHS Trust Charitable Funds, £200K, 2014-2015 (Co-Investigator)
Supervision
PhD Cardiff University
Francesca Mazzaschi: Developing a screening tool for the late effects of treatment for brain cancers. 2018-present: Co-Supervisor
Past projects
MSc Palliative Medicine
Louise Walker (MSc Palliative Medicine 2017-2018): Designing a set of culturally and linguistically appropriate phrases to be used when breaking bad news to isiZulu cancer patients: a qualitative study. Lead Supervisor
Megumi Baba (MSc Palliative Medicine 2012-2014): Comparing the knowledge, attitude and practice of Japanese and UK Paediatric Oncologist in palliative care: Co-Supervisor
Elaine McGleish (MSc Palliative Medicine 2012-2014): The attitudes and experiences of General Practitioners towards Nurse Independent Prescribing of the Clinical Nurse Specialist in Palliative Care: Co-Supervisor
Kate Barnabas (MSc Palliative Medicine: 2011-2012): Meta-study of qualitative research exploring the palliative support needs of patients with neurological conditions: Co-Supervisor
BSc Intercalated Medicine
Emma Fiddimore (Intercalated BSc Student: Populatin Medicine: 2020-2021): "What is the current evidence ont he expectations and experiences of adults who have received Proton Beam Therapy for the treatmetn of cancer?": Lead Supervisor
Caroline Woodman (Intercalated BSc Student: Clinical Epidemiology: 2013-2014): Place of care for patients at the end-of-life: the preferences and perspectives of family caregivers: Lead Supervisor
William Marsh (Intercalated BSc Student; Public Health Route: 2009-2010): Field-testing of an intervention to support women choosing surgery for breast cancer: Co-Supervisor