Dr Victoria Shepherd
Research Fellow - Nurse
- shepherdvl1@cardiff.ac.uk
- +44 (0)29 2068 7641
- 413, Neuadd Meirionnydd, University Hospital of Wales, Heath Park, Cardiff, CF14 4YS
- Available for postgraduate supervision
Overview
I am a Research Fellow based in the Centre for Trials Research where I have a special interest in research involving populations where informed consent can be challenging such as older people living in care homes, critical care and emergency settings, and trials involving the use of proxy and deferred consent models.
I lead a programme of methodological research exploring the ethical, legal and practical issues around research involving adults who lack capacity consent. This includes a current NIHR Advanced Fellowship and a previous NIHR Doctoral Research Fellowship. This research programme includes the development of complex interventions to address the ethical and methodological barriers to conducting trials with adults who lack capacity.
I am involved in and lead a number of care home research studies, including leading a study to establish the research priorities in care homes using consensus-based methods, and am a member of a number of national and international care home research collaborations. I am Chair of the ENRICH Cymru Advisory Group. Prior to this I had an extensive clinical career as a Registered Nurse, the majority spent in critical care settings in England and Wales. I am also an expert member on an NHS Research Ethics Committee.
Biography
Honours and awards
PhD Deciding about research for others: normative, empirical, and legal accounts of proxy decision-making for research and the development of a decision support intervention (November 2019)
Finalist in in Wales Nurse of the Year Awards 2019 - Supporting Improvement Through Research Award (runner up)
BSc Acute and Critical Care, MA Healthcare Law and Ethics. Dissertation: Vulnerable populations in medical research: is research regulation ‘protecting them to death'? (September 2014)
Professional memberships
NMC (Nursing and Midwifery Council)
Institute of Medical Ethics
RCN Wales Nurse of the Year Alumni Network
Committees and reviewing
Member of NHS Research Ethics Committee (2019-present)
Chair of ENRICH Cymru Advisory Group (2021-present)
Consultant Editor in clinical trials & care homes studies for Geriatrics, Gerontology and Aging (March 2020-present)
Journal reviewer (e.g Trials, Age and Ageing, Nurse Education in Practice)
Grant reviewer (e.g NIHR, Health and Care Research Wales, Dunhill Medical Trust)
Publications
2021
- Raven-Gregg, T. and Shepherd, V. 2021. Exploring the inclusion of under-served groups in trials methodology research: an example from ethnic minority populations' views on deferred consent. Trials 22, article number: 589. (10.1186/s13063-021-05568-z)
- Raven-Gregg, T., Wood, F. and Shepherd, V. 2021. Effectiveness of participant recruitment strategies for critical care trials: a systematic review and narrative synthesis. Clinical Trials 18(4), pp. 436-448. (10.1177/1740774520988678)
- Shepherd, V. 2021. Consent support tool: Including people with communication disorders in health research studies [Book Review]. Dementia 20(5), pp. 1855-1856. (10.1177/1471301220985401)
- Shepherd, V. 2021. How nurses can support the inclusion in research of older people who lack capacity to consent. Nursing Older People 33(2), pp. 26-31. (10.7748/nop.2020.e1267)
- Wachhloz, P. A.et al. 2021. Mapping research conducted on long-term care facilities for older people in Brazil: a scoping review. International Journal of Environmental Research and Public Health 18(4), article number: 1522. (10.3390/ijerph18041522)
- Jones, A.et al. 2021. Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations. BMJ Open 11(1), article number: e041869. (10.1136/bmjopen-2020-041869)
- Shepherd, V.et al. 2021. Development of a decision support intervention for family members of adults who lack capacity to consent to trials. BMC Medical Informatics and Decision Making 21, article number: 30. (10.1186/s12911-021-01390-4)
- Shepherd, V.et al. 2021. 'There's more to life than money and health': family caregivers' views on the role of Power of Attorney in proxy decisions about research participation for people living with dementia. Dementia 20(1), pp. 308-325. (10.1177/1471301219884426)
2020
- Jacinto, A. F.et al. 2020. Using international collaborations to shape research and innovation into care homes in Brazil: a white paper. Journal of Nursing Home Research Sciences 6, pp. 109-113. (10.14283/jnhrs.2020.28)
- Shepherd, V.et al. 2020. Constructing authentic decisions: proxy decision making for research involving adults who lack capacity to consent. Journal of Medical Ethics (10.1136/medethics-2019-106042)
- Shepherd, V. 2020. Advances and challenges in conducting ethical trials involving populations lacking capacity to consent: a decade in review. Contemporary Clinical Trials 95, article number: 106054. (10.1016/j.cct.2020.106054)
- Kirby, N.et al. 2020. Nocebo effects and participant information leaflets: evaluating information provided on adverse effects in UK clinical trials. Trials 21(1), article number: 658. (10.1186/s13063-020-04591-w)
- Butler, C. C.et al. 2020. Effect of probiotic use on antibiotic administration among care home residents: a randomized clinical trial. Journal of the American Medical Association 324(1), pp. 47 - 56. (10.1001/jama.2020.8556)
- Shepherd, V. 2020. Decision-making during pandemics and other serious illness. Geriatrics, Gerontology and Aging 14(2), pp. 79-80. (10.5327/Z2447-21232020142EDT1)
- Shepherd, V. 2020. An under-represented and underserved population in trials: methodological, structural, and systemic barriers to the inclusion of adults lacking capacity to consent. Trials 21(1), article number: 445. (10.1186/s13063-020-04406-y)
- Shepherd, V. and Davies, J. 2020. Conducting a randomized controlled trial in care homes: the challenges of recruiting residents who lack capacity to consent. In: SAGE Research Methods Cases: Medicine and Health. SAGE, (10.4135/9781529726626)
2019
- Shepherd, V.et al. 2019. 'It's a tough decision': A qualitative study of proxy decision-making for research involving adults who lack capacity to consent in England and Wales. Age and Ageing 48(6), pp. 903-909. (10.1093/ageing/afz115)
- Wachholz, P.et al. 2019. Research on long-term care homes for older people in Brazil: protocol for a scoping review. East Midlands Research into Ageing Network 32, pp. 1-16.
- Shepherd, V. 2019. Deciding about research for others: normative, empirical, and legal accounts of proxy decision-making for research and the development of a decision support intervention. PhD Thesis, Cardiff University.
- Owen-Jones, E.et al. 2019. Protocol for a double-blind placebo-controlled trial to evaluate the efficacy of probiotics in reducing antibiotics for infection in care home residents: the Probiotics to Reduce Infections iN CarE home reSidentS (PRINCESS) trial. BMJ Open 9(6), article number: e027513. (10.1136/bmjopen-2018-027513)
- Shepherd, V.et al. 2019. Research involving adults lacking capacity to consent: a content analysis of participant information sheets for consultees and legal representatives in England and Wales. Trials 20, article number: 233. (10.1186/s13063-019-3340-5)
- Edvardsson, D.et al. 2019. Advancing long-term care science through using common data elements: candidate measures for care outcomes of personhood, well-being, and quality of life. Gerontology and Geriatric Medicine 5, pp. 1-15. (10.1177/2333721419842672)
- Shepherd, V.et al. 2019. Protection by exclusion? The (lack of) inclusion of adults who lack capacity to consent to research in clinical trials in the UK. Trials 20, article number: 474. (10.1186/s13063-019-3603-1)
2018
- Shepherd, V.et al. 2018. Ethical understandings of proxy decision making for research involving adults lacking capacity: a systematic review (framework synthesis) of empirical research. American Journal of Bioethics 9(4), pp. 267-286. (10.1080/23294515.2018.1513097)
- Francis, N. A.et al. 2018. Oral steroids for hearing loss associated with otitis media with effusion in children aged 2 8 years: the OSTRICH RCT. Health Technology Assessment 22(61) (10.3310/hta22610)
- Jordan, A.et al. 2018. What adolescents living with long-term conditions say about being involved in decision-making about their healthcare: A systematic review and narrative synthesis of preferences and experiences. Patient Education and Counseling 101(10), pp. 1725-1735. (10.1016/j.pec.2018.06.006)
- Shepherd, V.et al. 2018. Healthcare professionals' understanding of the legislation governing research involving adults lacking mental capacity in England and Wales: a national survey. Journal of Medical Ethics 44(9), pp. 632-637. (10.1136/medethics-2017-104722)
- Francis, N. A.et al. 2018. Oral steroids for resolution of otitis media with effusion in children (OSTRICH): a double-blinded, placebo-controlled randomised trial. Lancet 392(10147), pp. 557-568. (10.1016/S0140-6736(18)31490-9)
2017
- Shepherd, V.et al. 2017. Impact of a deferred recruitment model in a randomised controlled trial in primary care (CREAM study). Trials 18(1), article number: 533. (10.1186/s13063-017-2284-x)
- Francis, N. A.et al. 2017. Oral and topical antibiotics for clinically infected eczema in children: a pragmatic randomized controlled trial in ambulatory care. Annals of Family Medicine 15(2), pp. 124-130. (10.1370/afm.2038)
- Shepherd, V., Wood, F. and Hood, K. 2017. Establishing a set of research priorities in care homes for older people in the UK: a modified Delphi consensus study with care home staff. Age and Ageing 46(2), pp. 284-290. (10.1093/ageing/afw204)
2016
- Gkiousias, V.et al. 2016. Parental perceptions and understanding of information provision, management options and factors influencing the decision-making process in the treatment of children with glue ear. International Journal of Pediatric Otorhinolaryngology 89, pp. 6-12. (10.1016/j.ijporl.2016.07.021)
- Shepherd, V. 2016. Research involving adults lacking capacity to consent: the impact of research regulation on 'evidence biased' medicine. BMC Medical Ethics 17(1), article number: 55. (10.1186/s12910-016-0138-9)
- Francis, N. A.et al. 2016. A randomised placebo-controlled trial of oral and topical antibiotics for children with clinically infected eczema in the community: the ChildRen with Eczema, Antibiotic Management (CREAM) study. Health Technology Assessment 20(19), pp. 1-84. (10.3310/hta20190)
- Waldron, C.et al. 2016. Oral Steroids for the Resolution of Otitis Media with Effusion (OME) in Children (OSTRICH): study protocol for a randomised controlled trial. Trials 17, article number: 115. (10.1186/s13063-016-1236-1)
2015
- Shepherd, V.et al. 2015. Setting up a clinical trial in care homes: challenges encountered and recommendations for future research practice. BMC Research Notes 8, article number: 306. (10.1186/s13104-015-1276-8)
2014
- Hood, K.et al. 2014. Probiotics for Antibiotic-Associated Diarrhoea (PAAD): a prospective observational study of antibiotic-associated diarrhoea (including Clostridium difficile-associated diarrhoea) in care homes. Health Technology Assessment 18(63) (10.3310/hta18630)
Adults with impaired capacity to consent
My primary research interest is addressing the ethical and methodological challenges around the inclusion of adults lacking capacity in research. I currently hold an NIHR Advanced Fellowship 'Deciding about research for others: a feasibility study and effectiveness trial of a novel decision support intervention for consultees and legal representatives of adults lacking capacity to consent (CONSULT)' (2021-2024). I previously held an NIHR Doctoral Research Fellowship to explore the ethical, legal and practical challenges around the inclusion of these under-represented populations, using mixed-methods and interdisciplinary approaches (2016-2019).
I have developed a novel complex intervention (a decision support tool) to enhance proxy decision-making for research (https://doi.org/10.1186/s12911-021-01390-4). I led a follow on study to conduct cognitive testing of the decision support intervention (DECISION 2 Study) funded by the Wellcome Trust through ISSF Institutional Funding (2020). I am also leading the development of a core outcome set to evaluate interventions that enhance proxy decisions about participation on behalf of adults who lack capacity (COnSiDER Study) which is registered on the COMET (Core Outcome Measures in Effectiveness Trials) database (http://www.comet-initiative.org/Studies/Details/1409). I supervise a number of Intercalated BSc medical student projects in this area and recently curated research and resources on 'Research and capacity to consent' for Social Care Wales' website https://socialcare.wales/curated-research/research-and-capacity-to-consent (Welsh version: https://gofalcymdeithasol.cymru/curadur-yr-ymchwil/ymchwil-ar-gallu-i-gydsynio ).
Care Homes
I have a special interest in care home research. I led a UK wide Research Priority Setting in Care Homes Study, which aimed to identify a set of research priorities for care home research with a key group of stakeholders, and a current core outcome set for the prevention of COVID-19 in care homes (COS COVID PCARE). I am also involved in collaborating with other national and international researchers/institutions to develop research proposals involving older people in long term care, some of which address areas identified as research priorities.
Clinical Trials
Previous research activities include contributing to the design, delivery and reporting of multicentre randomised controlled trials, including: Children with Eczema, Antibiotic Management - CREAM Study (NIHR HTA), Oral STeroids for the Resolution of otitis media with effusion (OME) In Children – OSTRICH Study (NIHR HTA) and Probiotics to Reduce Infections iN CarE home reSidentS – PRINCESS Study (NIHR EME).
Trials Methodology Research
I am interested in research to improve the conduct of trials, with a particular focus on improving inclusivity of under-served populations in research. I co-lead the inclusivity theme of the Trial Conduct Working Group of the MRC-NIHR Trials Methodology Research Partnership.
Research Ethics
I am involved in a number of projects exploring ethical aspects of research, including models of consent used in different research contexts such as emergency situations, and patient and clinician decisions.
Supervision
I am interested in supervising PhD students in the areas of:
- trials methodology research focusing on the inclusion of under-served groups
- ethical and legal issues in research involving populations where there may be challenges around capacity to consent
- care homes and care home research
Current PhD supervision:
Title: Engaging care home residents in research: identification of barriers and facilitators and the development of an intervention to support residents in decision-making and advance planning for research (ENGAGE)
PhD Student: Elizabeth Hurt
This mixed-methods PhD project aims to explore how care home residents and their carers can be better engaged in research, and the barriers and facilitators to their inclusion. Using established intervention development methods, an intervention will be developed to support conversations about research with care home residents and facilitate advance planning for research participation. The findings will support opportunities for care home residents to participate in research, have their voices heard, and receive quality evidence-based care in the future. It is funded through a Health and Care Research Wales Social Care PhD studentship (2021-2024).