Decision making processes in learning disability services- in whose BI
Research type
Research Study
Full title
Decision making processes in Learning Disability Services - in whose Best Interests?
IRAS ID
283329
Contact name
Lorna Montgomery
Contact email
Sponsor organisation
Queen's University Belfast
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 6 months, 30 days
Research summary
Summary of Research
The aim of the research is to explore how we determine what is in an individual's Best Interests. The research will aim to examine decision-making processes in learning disability services for individuals who lack capacity and to explore the Best Interests (BI) Principle as defined within the Mental Capacity Act (NI) 2016. The research will aim to gain a better understanding of the BI Principle (MCA (NI) 2016) and associated processes (supported decision-making /substitute decision-making). The research will aim to identify issues in current Best Interests practice and consider recommendations on how this could be implemented for future practice.
The research will involve interviewing individuals with a learning disability who have experienced Best Interest processes. This process will require time from HSCT staff to identify individuals and communicate with those individuals who would be suitable to participate in the research. It is envisaged that the interviews will take place over a number of weeks. The interviews will be facilitated in order to meet each individual participant's needs. This may include the researcher having to meet with a participant on more than one occasion in order to undertake the interview and gather the data. It is envisaged that the interviews will take place in a Health and Social Care Trust facility. The interviews may also take place in a preferred location of the participant however, the researcher will be cogniscent of the appropriateness of this location and assess the environment prior to interview. i.e. consider the location of room where interview will take place etc. The researcher will also be mindful of COVID-19 restrictions and guidelines. Based on the interviews with individuals who have experienced best interests processes, a twenty-minute electronic survey will be developed and sent to staff members employed by the HSCTs who have been involved in BI decision-making processes.Summary of Results
• Both interview and survey responses highlighted how there was limited availability of options to choose from in relation to day opportunities and accommodation for individuals with a learning disability. The research highlighted that a number of participants reported that they had only been offered one option. A number of interview participants reported that they did not choose where they lived or what they did during the day. They reported that where they lived or what they did during the day was decided upon by someone else.
• Some survey participants detailed how they involved the individual in the Best Interests decision including; consulting with the individuals, their Nominated Person and their family. However, survey participants also reported that there should be further inclusion of individuals and their families in Best Interests decisions. Interview participants reported that those making the Best Interests decision should know the person before a decision was made and consider risk of harm as a reason for making a decision on someone’s behalf.
• There are occasions when Best Interests decision meetings are held and occasions when they are not. It is not clear why some individuals may have a Best Interests meeting and another does not. Some responses highlighted the inclusion of the individual in the Best Interests decision and others indicated that they were not included. Not all responses detailed the inclusion of the individual's carer in Best Interests decisions.
• The interviews explored participants’ perspectives on Special Regard in relation to the Best Interests decision. The research team acknowledged Special Regard is a complex term to understand. Some interview participants indicated their thoughts on how Special Regard was or was not considered in their Best Interests decisions. Some survey participants suggested that an individual’s Special Regard was unable to be obtained due to their ‘severe learning disability’ diagnosis. There is learning for those making Best Interests determination statements in relation to how they can best capture the individual’s wishes, feelings, beliefs and values in respect of future care and treatment, regardless of an individual’s diagnosis.
• The interview findings highlighted the language used under the MCA (NI) 2016. The findings also highlighted the increased need to support an individual to meet their communication needs. Over half of survey participants indicated that they referred to Speech and Language Therapy for communication support during the Best Interests Decision-making process. The findings highlighted the need to communicate options / choices / decisions / outcomes with the individuals to whom the decision is being made in their best interests.REC name
HSC REC A
REC reference
21/NI/0035
Date of REC Opinion
25 Mar 2021
REC opinion
Further Information Favourable Opinion