Stephanie Sivell

BA (Hons), MPhil, PhD

2023

• Retzer, A. et al. 2023. Development of a core outcome set for use in adult primary glioma phase III interventional trials: A mixed methods study. Neuro-Oncology Advances 5(1), article number: vdad096. (10.1093/noajnl/vdad096)
• Harrop, E. et al. 2023. Prolonged grief during and beyond the pandemic: factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic. Frontiers in Public Health 11, article number: 1215881. (10.3389/fpubh.2023.1215881)
• Goedegebuur, J. et al. 2023. Towards optimal use of antithrombotic therapy of people with cancer at the end of life: a research protocol for the development and implementation of the SERENITY shared decision support tool. Thrombosis Research 228, pp. 54-60. (10.1016/j.thromres.2023.05.008)
• Sivell, S., Price, D. and Carson-Stevens, A. 2023. The challenges and experiences of providing end-of-life care in primary care: online survey and semi-structured interviews with UK primary care professionals.. Presented at: RCGP Annual Conference 2023, Glasgow, 19-20 October 2023, Vol. 73. Vol. Suppl. Royal College of General Practitioners, (10.3399/bjgp23X733833)
• Fiddimore, E., Harrop, E., Nelson, A. and Sivell, S. 2023. 'I don't want to hear statistics, I want real life stories': systematic review and thematic synthesis of patient and caregiver experiences of Proton Beam Therapy. Journal of Psychosocial Oncology 41(4), pp. 434-456. (10.1080/07347332.2022.2136997)
• Goss, S. et al. 2023. Bereavement during Covid-19: Findings from a UK-wide online survey on the use and perceived helpfulness of informal and formal support during the pandemic. Presented at: The Marie Curie Research Conference 2023, Virtual, 6-10 February 2023, Vol. 13. BMJ Publishing Group pp. A6., (10.1136/spcare-2023-MCRC.14)
• Goss, S., Sivell, S., Baddeley, E., Griffiths, L., Makuta, G. and Byrne, A. 2023. Achieving consistency and consensus in evaluating the impact of palliative care service interventions: development of an effectiveness core outcome set for adult palliative care services in Wales. Presented at: The Marie Curie Research Conference 2023, Virtual, 6-10 February 2023, Vol. 13. pp. A6-A7., (10.1136/spcare-2023-MCRC.15)
• Sivell, S. et al. 2023. Protocol to evaluate the implementation of the royal college of general practitioners and Marie Curie Daffodil Standards in UK general practice. Presented at: The Marie Curie Research Conference 2023, Virtual, 6-10 February 2023, Vol. 13. BMJ Publishing Group pp. A8., (10.1136/spcare-2023-MCRC.19)
• Sivell, S., Price, D. and Carson-Stevens, A. 2023. Understanding the experiences of providing end-of-life care in UK general practices; preliminary data from an independent evaluation of the daffodil standards.. Presented at: The Marie Curie Research Conference 2023, Virtual, 6-10 February 2023, Vol. 13. BMJ Supportive and Palliative Care: BMJ Publishing Group pp. A8-A9., (10.1136/spcare-2023-MCRC.20)

2022

• Scott, H. et al. 2022. What should good bereavement service support look like? Findings from pre-pandemic workshop discussions interpreted in the context of the Covid-19 pandemic. Bereavement: Journal of Grief and Responses to Death 1 (10.54210/bj.2022.1078)
• Baddeley, E. et al. 2022. The impact of glioma on quality of life: findings from a mixed methods study to develop a core outcome set for glioma interventional trials (COBra Study). Presented at: International Society for Quality of Life Research (ISOQOL) 29th Annual Conference, Prague, Czech Republic, 19-22 October 2022.
• Retzer, A. et al. 2022. Core outcomes in brain tumour trials – the COBra study review of glioma trial registration data. Presented at: BNOS 2022, Liverpool, 22-24 June 2022, Vol. 24. Oxford University Press, (10.1093/neuonc/noac200.019)
• 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 12, article number: 57712. (10.1136/bmjopen-2021-057712)
• Baddeley, E. et al. 2022. The importance of treatment tolerability for people with glioma: registry review and qualitative findings from the COBra Study.. Presented at: European Association of Neuro-Oncology (EANO), Vienna, Austria, 15-18 September 2022, Vol. 24. Vol. 2. Oxford Academic pp. ii47., (10.1093/neuonc/noac174.162)
• 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)
• Goss, S., Sivell, S., Baddeley, E., Griffiths, L., Makuta, G. and Byrne, A. 2022. Development of a core outcome set for evaluating the effectiveness of adult palliative care services in Wales. Project Report. NHS Wales and Marie Curie Palliative Care Research Centre.
• 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)
• Baddeley, E. et al. 2022. Evaluation of patient and public involvement in the development of a patient reported outcome set in brain tumour trials (COBra Study). Presented at: National PROMs Annual Research Conference, National, 14-15 June 2022.
• Goss, S. et al. 2022. Bereavement during Covid-19: Findings from a UK-wide online survey on the use and impact of informal and formal support among people grieving during the pandemic.. Presented at: European Grief Conference 2022, Copenhagen, Denmark, 21-23 September 2022.

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)
• Mazzaschi, F., Sivell, S., Byrne, A., Brain, K., Powell, J. and Nelson, A. 2020. What are the cognitive deficits observed in adults with brain cancer after receiving radiotherapy or combined chemo-radiotherapy?. Presented at: 11th EAPC World Research Congress, Online, 7-9 October 2020, Vol. 34. SAGE Publications, (10.1177/0269216320958098)

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)
• Nelson, A., Longo, M., Sivell, S., Byrne, A., Lester, J., Anagnostou, D. and Sampson, C. 2019. Avoidable harm: making decisions about chemotherapy with advanced lung cancer patients. Presented at: NCRI 2019, Glasgow, UK, 3-5 November 2019.

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.