challenges in MHR

So I thought it would be important to talk firstly about some of the underlying principles regarding challenges in mental health research. 

So, Clarity and transparency:

• Researchers need to be clear about why they are seeking user involvement and service users about why they wish to become involved in a project.
• Clarity about the roles and responsibilities of all parties needs to be discussed.
  
• as well as Expectations: both researchers and service users would benefit from a frank discussion about what they hope they will gain from projects.

• It is important that the diversity of service users involved should reflect the nature of the research project itself

• And when looking at capacity building, researchers need to ensure that they take into account the diversity of the population which they serve and include people from minority backgrounds, as well as people with different mental health diagnoses and some of the issues relating to the population group

• It is important that all those participating respect one another as well as a difference in views

• Flexibility needs to be built into research projects from the start; this has implications for funders and commissioners to allow greater flexibility in timescales and resources

• Accessible formats for the presentation of research materials may also be necessary (e.g visual aids, materials like larger text print, etc)

Gaining approval from ethical committees is widely seen as challenging. It is common for ethical committees to ask for revisions and other changes to study protocol before full ethical approval is given.

“A research project looking at National Research Ethics Service REC’s decisions showed the most common concerns to be: informed consent; care, protection and recruitment of research participants; and the provision of information such as patient information materials and lay summaries of the research”. 

There are many things to think about when starting research in order to maximise the potential success of user involvement and minimise challenges. It is therefore important to consider the following thoroughly:  

• Ideally service users should be involved from the very start if they are to have real influence over the direction of the project 
• Ensuring a full assessment is made of the required resources in terms of both time and money 
• Researchers and service users need to find ways of dealing with distress if and when it arises; it may be helpful to set this up at the start of the project.
• Poor communication with departments can lead to instability and can waste valuable time and resources. 

Patients may perceive research participation as an extra energy demand. Fatigue may prompt poor research engagement, incomplete research sessions, or withdrawal from participation. Regulatory demands for therapy intensity and duration may also contribute to the effect of a participant’s fatigue

Families, friends, and significant others may also exhibit protectiveness regarding patients’ health and well-being, serving as gatekeepers for the recruitment process. And so families may actively discourage patients to contribute to research. 

With their primary focus on providing care in an increasingly complex environment, clinical staff may lack investment and time for research. 

The environmental and space restrictions common in most hospitals is also a potential deterrent to research. I know from my own experience on the wards, there is little space off-ward for research activities as these are usually occupied by professional meetings or therapies. 

The process of working on a project is often of more importance to service users than it is to researchers, in the sense that they may not have the same outcome-related incentives as researchers. It is important that the process is inherently pleasant to sustain people’s interest and enthusiasm in order to reduce withdrawal from research. 

And so firstly adequate support is vital.

Training may be necessary in order for service users to be able to make an equal or appropriate contribution to the research project, but it can also act as an incentive in its own right, providing skills for people that may be useful in other contexts.

There are issues of power and disempowerment to be considered and acknowledged. The way in which differences of opinion are dealt with and resolved is a major part of how this will be played out.

And lastly flexibility needs to be an on-going consideration. 

And lastly safeguarding. I’ve put Safeguarding as a separate slide because of it’s increasing importance in research paticulary for mental health settings. 

Finding ways of appropriately informing participants of the limits of confidentiality in the event of a disclosure about harm or abuse, is fraught with challenges in terms of definitions and understanding of terms used.

Additionally, knowing your responsibility in situations of abuse or harm can be difficult. This is a huge responsibility for those involved in research and so both points can be seen as quite challenging for researchers if these situations do arise, and so it is important to fully be aware of protocols in relation to safeguarding vulnerable groups involved in research.