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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)


   Cardiff School of Medicine


About the Project

Older people living in care homes, particularly those with dementia and similar conditions, are less likely to be involved in research than other populations despite often having the highest and most complex care needs. This is primarily due to the complex ethical and practical issues surrounding the inclusion of people unable to provide informed consent, which affects about 70% of care home residents. It is also because care homes are less ‘research active’ than other care settings. The current lack of research involving care home residents results in a poorer evidence-base for their care. The impact of COVID-19 on care home residents has highlighted the stark inequalities experienced by groups who are least likely to be involved in research.

Care home residents are increasingly being encouraged to have advance care planning discussions about their care preferences. These could be extended to include discussions about research participation, including their wishes and preferences in the event that they are unable to make their own decisions about participation in the future, although these more complex conversations may benefit from interventions to support and facilitate discussion. Research in countries such as Australia and Germany has shown that interventions to support advance research planning are valuable and could promote appropriate inclusion in research for older people, including people living with dementia. Advance research planning has yet to be explored in the UK or to include care home residents.

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.

 The project will be conducted in three stages.

1) A scoping review of existing literature will be conducted using established scoping review methods to identify the barriers and facilitators to involving older people living in UK care homes in research. Informed by the review findings, a survey will be conducted with residents, families, and care home staff across Wales, including those already part of the ENRICH Cymru network of ‘research ready’ care homes and those who are less research active.

2) Semi-structured interviews will be conducted with residents, families, and care home staff who will be purposively sampled across Wales. The interviews will explore their views about residents participating in research and encouraging early discussions in order to facilitate advance planning for research and identify barriers and facilitators and appropriate timing for these discussions.

3) The final stage will be to develop a communication and/or decision support intervention to facilitate discussions with care home residents about research participation using intervention development methods (e.g MRC guidance on developing complex interventions). The intervention will be produced in collaboration with care home residents, families, and staff and undergo small scale piloting to explore the initial acceptability of the intervention. To support the use of the intervention, an education/training resource will be developed for care home staff that will increase their knowledge and awareness about their role in supporting residents to access research opportunities.

The supervision team are experienced in a broad range of mixed-methods research and developing complex interventions. The PhD student will be fully supported to manage any ethical and practical issues arising from recruiting older people living in care homes by the supervision team who have experience in conducting research in this setting. The Studentship includes opportunities to present at internal and external events, including academic conferences, and through the supervisors’ research networks such as PRIME Centre Wales. Training will include systematic/critical review of evidence, qualitative research methods, and intervention development. A range of research training opportunities are also available through Cardiff University’s Doctoral Academy Programme.

The Studentship is funded by the Welsh Government through a Health and Care Research Wales Social Care PhD Studentship which includes stipend, tuition fees, research costs, training and public involvement, with additional consumables funded by Cardiff University’s School of Medicine PhD Studentship Consumables fund.

Supervisory team profiles

Dr Fiona Wood https://www.cardiff.ac.uk/people/view/126862-wood-fiona

Dr Victoria Shepherd https://www.cardiff.ac.uk/people/view/362499-shepherd-victoria

Prof Kerry Hood https://www.cardiff.ac.uk/people/view/153375-hood-kerry

Prof Carolyn Wallace https://staffdirectory.southwales.ac.uk/users/carolyn.wallace.html

How to Apply

This studentship has a start date of October 2021. In order to be considered you must submit a formal application via Cardiff University’s online application service. (To access the system click the 'Visit Institution' button on this advert) or follow this link

https://www.cardiff.ac.uk/study/postgraduate/research/programmes/programme/medicine

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 2021). 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 (optional, references will only be required if you are shortlisted for interview)
  • Proof of English language (if applicable)

Funding Notes 

The studentship is generously funded by Health Care Research Wales.

Full UK 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. 

PLEASE NOTE* International applicants are welcomed if the difference in fees can be covered. 

Entry Requirements 

Applicants should possess a minimum of an upper second class Honours degree, master's degree, or equivalent in a relevant subject such as a degree within the social sciences, nursing, health and social care, medicine, etc.

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


Funding Notes

PLEASE NOTE* EU, other EEA and Swiss nationals and their family members who are covered by the withdrawal agreements will continue to have access to home fee status and student financial support on broadly the same basis as now. Such persons will have applied for pre-settled or settled status under the EU Settlement Scheme (EUSS). For more information visit View Website

References



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