Recommendations for research
The guideline committee has made the following recommendations for research. The committee's full set of research recommendations is detailed in the full guideline.
What is the effectiveness and cost effectiveness of different training programmes on the Mental Capacity Act 2005 at improving practice for practitioners involved in supporting decision-making, conducting capacity assessments and making best interests decisions?
The guideline committee agreed that effective training and support on the Mental Capacity Act 2005 and how to apply its principles in practice is essential for practitioners working with people who may lack capacity to make a decision. The evidence the committee reviewed often referred to training and support, but very few studies looked at this area specifically. Some of the evidence suggested that practitioners did not always understand the requirements of the Act and that their practice did not always comply with these. Much of the evidence was of low to moderate quality and there was no good-quality evidence evaluating the effectiveness of training and support in relation to the Act.
A better understanding of what training and support increases compliance with the Act could improve outcomes for people who may lack capacity to make a decision. Qualitative studies exploring the current barriers to delivering effective training and support and the challenges that practitioners face in using this learning in practice would help to inform measures for improvement.
Comparative studies are needed to determine the effectiveness and cost effectiveness of different approaches for delivering training and support to practitioners. Evaluating whether these increase compliance with the requirements of the Act would be especially informative.
What is the effectiveness and cost effectiveness of different targeted interventions (speech and language therapy and psychological and psychosocial interventions) to support and improve decision-making capacity for treatment in specific groups?
Evidence suggests that tailored approaches such as speech and language therapy and psychological and psychosocial interventions can lead to improvements in a person's capacity to make a decision. However, the studies were limited in number and generally of low quality. The guideline committee agreed that further research in this area would be valuable, particularly in relation to the decision-making capacity for treatment of people with dementia, a learning disability, an acquired brain injury or a mental illness. Interventions should be designed to address the needs of those cohorts, should take into account the natural course of capacity (whether stable or fluctuating) and should be underpinned by a comprehensive understanding of the needs associated with each condition.
High-quality comparative studies evaluating the effectiveness of these different types of interventions (including participant experience of the interventions) are needed to help ensure that practitioners refer people to the most appropriate programmes. This would empower people to make their own decisions about their treatment wherever possible.
What is the effectiveness, cost effectiveness and acceptability of advocacy as a means of supporting people to make decisions?
The evidence reviewed did not include any studies that evaluated the effectiveness or acceptability of advocacy as a means of supporting people to make decisions. However, the guideline committee thought that this was an area in which emerging practice shows promise. Expert witness testimony highlighting the Swedish 'Personal Ombudsman' peer support scheme also suggested that further research into the use of advocacy as a means of supporting decision-making might be useful. Although provision for advocacy already exists for people assessed as lacking capacity to make a decision (through an Independent Mental Capacity Advocate), this type of support could also benefit people who, although retaining capacity, may need support to make a decision.
High-quality mixed methods studies with a controlled effectiveness component (preferably randomised) are needed to evaluate the effectiveness and cost effectiveness of advocacy as a tool to support the decision-making of people who may need support to make a decision. The effectiveness component will ideally include 3 arms: usual care, usual care plus advocacy, and usual care plus support with enhanced advocacy. Studies should also include a qualitative component that explores whether advocacy as a means of support to make decisions is acceptable to people using services and valued by practitioners.
What is the accuracy and/or effectiveness, cost effectiveness and acceptability of mental capacity assessment tools that are compliant with the Mental Capacity Act 2005?
There is a lack of evidence from the UK on the effectiveness and acceptability of approaches to capacity assessment that are in line with the meaning of mental capacity as outlined in the Mental Capacity Act 2005. Although the guideline committee reviewed some evidence evaluating the accuracy of specific tools, these are not necessarily compatible with the definition of mental capacity.
There is a need for high-quality mixed methods studies that evaluate the accuracy or effectiveness of mental capacity assessment tools that are compliant with the Act. The controlled effectiveness component will ideally include 3 arms: usual care, usual care plus mental capacity assessment tools, and usual care plus support with enhanced assessment tools. Studies should also include a qualitative component that explores whether such tools and approaches are acceptable to people using services and valued by practitioners.
What are the components of an effective assessment of mental capacity to make a decision (for example checklists, memory aids or standardised documentation)?
Although the Mental Capacity Act Code of Practice provides some fundamental guidance on conducting and recording capacity assessments, there is a lack of clarity about the way in which practitioners actually conduct assessments of capacity to make a decision and how the process and outcomes of these assessments are being recorded. The guideline committee reviewed the small amount of available evidence suggesting that practice may be improved through the use of standardised forms. However, these studies tended to be poorly designed – for example, relying on audit data.
There is a need for high-quality research that explores in detail how to conduct an effective capacity assessment. This could include studies comparing one‑off capacity assessments with multiple assessments, and comparative studies evaluating whether certain approaches or tools are appropriate.