Oral and respiratory health in adults with a neuro-disability
Research type
Research Study
Full title
Oral health and the relationship with prevalence of chest infections in adults living with a neuro-disability at the Royal Hospital for Neuro- disability (RHN).
IRAS ID
133611
Contact name
Blanaid Daly
Contact email
Sponsor organisation
Kings College Dental Institute
Research summary
One of the key issues in this study is the decision to include individuals who lack the capacity to consent. Throughout the decision making process and study design we referred to national guidance from the Department of Health (Mental Capacity Act 2005 - MCA) and The British Psychological Society (Conducting research with people not having the capacity to consent to their participation 2008).
Firstly we explored the issue of justification, and felt given the fact that up to 95% of the participants living at the RHN are likely to lack capacity, conducting research excluding this group would lead to smaller numbers and results that would not be as effective. And although we are not proposing research that will treat the neuro-disability, we are investigating conditions that play a role in their quality of life. Secondly we will act to ensure the necessary steps will be undertaken to take into account the safeguards provided in the Mental Capacity Act. This includes having clear guidance when assessing capacity and seeking advice from personal consultees when appropriate. All members of the research team have experience in treating patients where capacity has to be assessed and the steps taken to ensure any treatment is completed in the patient’s best interest. The research proposed does not involve any actions not completed during dental screening and examination, which are part of standard and routine care provided to patients at the RHN. Autonomy will be respected throughout and should an individual express discomfort, or be unable to co-operate for the dental examination the examination will stop. While the dental examination we propose would be part of standard care provided at the RHN, we are aware that by arranging to undertake the dental screening and examination in the proposed study time frame, this largely is for the convenience and purposes of the researcher and the research.
In addition, if on dental examination individuals are identified as requiring dental treatment, for example in need of a scale, treatment of decayed teeth, a referral to the individual’s dentist will be made immediately and treatment will be completed. The researcher will be working closely with the RHN dentist, Graham Manely, throughout the research period.
As participants are residing at the RHN for long term care the question of undue pressure to participate may also be raised. Through the means of the information sheet and a verbal explanation during recruitment it will be highlighted that participation is entirely voluntary and the services they receive at the hospital will not change whether they choose to take part or not. A witness nominated by the individual will be present during the recruitment process to ensure that individuals are not being coerced into participation.
With regards to confidentiality the research team will respect the Confidentiality code of practice and the UK Data protection Act 1998. From the outset, participants are informed of what information will be collected about them and that all the data gathered will be kept confidential. The information pertaining to participants will be attached to a unique number. The document stating the numbers will be stored on a password protected computer at the RHN and only the student (RP) and supervisor (GM) will have access to it. All data collected during the study will be stored on a password protected computer at the RHN, if any data is to be transported it will be done via an NHS trust approved encrypted memory stick. No personal information is to be shared.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
13/SC/0441
Date of REC Opinion
9 Oct 2013
REC opinion
Further Information Favourable Opinion