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PhD in Population Medicine - Increasing inclusivity in trials: supporting decision-making about involving adults and young people with profound and multiple learning disabilities in research


Project Description

Adults and young people with profound and multiple learning disabilities (PMLD) frequently have complex medical conditions which can be life limiting and require specialist care and support. PMLD may experience problems with communication and decision-making which may affect their ability to make a decision about participation in research - even with supported decision-making. Populations with impaired capacity to consent, including PMLD, are frequently excluded from research, with over 90% of randomised controlled trials (RCTs) being designed to exclude people with a learning disability. This is primarily due to the complex ethical and legal issues surrounding the inclusion of people unable to provide informed consent, and the practical challenges of involving alternative ‘proxy’ decision-makers on their behalf. Interventions to enable trials to be more inclusive of under-represented groups has been highlighted as a priority area for further research in order to ensure that trials are generalisable and that the benefits of research are distributed equitably across all population groups.

Previous research has explored how families are involved in making decisions about research for people who have lost capacity due to conditions such as dementia. This found that research decisions are complex, with proxies using the biographical narrative of the person they represent to make a decision they think is authentic to their values and wishes. However, there is a dearth of research exploring how decisions are made for PMLD who may have had life-long impaired capacity and may not have formed or expressed wishes and feelings which could guide proxy decisions about research participation. There may be additional issues around proxy decision-making for children and young people’s continued inclusion in research when they reach the age of majority and legal capacity, but do not have mental capacity to make decisions about continued participation. In these situations, family members’ role will change from providing parental consent to acting as consultee or legal representative for their adult child.

This project aims to explore how decisions about research are made by family members and professionals caring for adults and young people with profound and multiple learning disabilities, to identify ways of conducting trials more inclusively and ethically for PMLD as an under-represented group, and the development of interventions to support those involved in the design and conduct of trials involving PMLD.

This mixed-methods project will be conducted in three stages.

1) Existing evidence will be reviewed to explore the range of ethical, legal, and practical issues surrounding the inclusion of adults and young people with profound and multiple learning disabilities (PMLD) in research.

2) Qualitative interviews and focus groups will be conducted with a range of stakeholders to explore the attitudes and experiences of those involved in caring for, and conducting research with, PMLD. This will include healthcare professionals (GPs, LD nurses and other community LD team members), social care practitioners (support workers from community and residential settings) and social workers involved in supporting PMLD. The topic guides for the interviews and focus groups will be informed by the findings from the literature review.

3) The final stage will be to develop an intervention to support the ethical inclusion of PMLD in trials using established intervention development frameworks (e.g MRC guidance for developing complex interventions) and in conjunction with the relevant stakeholder groups. It may take the form of an educational intervention for health and/or social care professionals who care for PMLD, or a decision support intervention for family members or health/social care professionals acting as a consultee or legal representative for PMLD.
The outcomes from the project will include improving our understanding about how decisions about research are made by family members and professionals caring for adults and young people with profound and multiple learning disabilities, to identify ways of conducting trials more inclusively and ethically for PMLD as an under-represented group, and the development of an intervention to support those involved in the design and conduct of trials involving PMLD.

Training will include systematic/critical review of evidence, qualitative research methods, and intervention development. A broad range of trials methodology research training and internship opportunities are also available.

Funding Notes

This is a competitive process, with four projects advertised and only one studentship will be funded.The studentship is generously funded by the School of Medicine as part of the MRC NIHR Trials Methodology Research Partnership (TMRP).

Open to all UK/EU students without further restrictions

Full UK/EU tuition fees

Doctoral stipend matching UK Research Council National Minimum.

Additional funding is available over the course of the programme and will cover costs such as research consumables and training.

Applications from International candidates are welcomed if they can cover the difference in home/Eu fees (£4,407) and Overseas fees (£21,950).

References

The TMRP brings together a number of national and international networks, institutions and partners undertaking clinical trials and trials methodology research. Our overall aim being to improve patient care by improving the way in which the healthcare evidence base is developed.

Our PhD programme presents a unique opportunity to undertake training and research in major areas where clinical trials need to be improved to help increase the health of society. Projects are available at locations across the UK for candidates with qualifications in a variety of subject areas including statistics, mathematics, health economics, epidemiology, psychology, social science, computer science, informatics and health services research.

What is included?

• Funding is available to support PhD study, tuition fees and student stipend.

• A broad range of trials methodology research training and internship opportunities across the Partnership, overseen by a Student Training Group chaired by Professor Catrin Tudur Smith (University of Liverpool)

• Membership of a student cohort, embedded within an international network of health researchers and clinical trialists

• Opportunity to join one or more of the TMRP Working Groups

• Exposure to a wide range of relevant research initiatives

ENTRY REQUIREMENTS

Applicants should possess a minimum of an upper second class Honours degree, master's degree, or equivalent in a relevant subject.

Applicants whose first language is not English are normally expected to meet the minimum University requirements (e.g. 6.5 IELTS)

HOW TO APPLY

This studentship has a start date of October 2020. In order to be considered you must submit a formal application via Cardiff University’s online application service. (To access the system click 'Apply Online' at the bottom of this advert)

There is a box at the top right of the page labelled ‘Apply’, please ensure you select the correct ‘Qualification’ (Doctor of Philosophy), the correct ‘Mode of Study’ (Full Time) and the correct ‘Start Date’ (October 2020). This will take you to the application portal.

In order to be considered candidates must submit the following information:

• Supporting statement
• CV
• Qualification certificates
• References x 2
• Proof of English language (if applicable)

In the 'Research proposal and Funding' section of your application, please specify the project titles and supervisors of the project/s.

Please Note* the supervisor reserves the right to close the advert early if sufficient applications are received.

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