How can Community Residential Services Effectively Support Adults with Intellectual Disabilities who Present with Challenging Behaviour and/or Mental Health Problems?

Editorial

Over the last 30 years services for people with intellectual disabilities have been transformed, with the replacement of institutions in many countries with community residential services [1,2]. This transformation has generally been quite successful and has led to better outcomes for people with intellectual disabilities. However, deinstitutionalization and community living has not been without its challenges, especially in terms of service users who have had complex additional problems such as challenging behaviour and/ or mental health problems [2].

How to maintain placements in the community and avoid hospital admission for adults with intellectual disabilities who present with challenging behaviour and/or mental health problems has become a major topic of concern. These days more and more therapies and training programmes are being developed to improve the health and wellbeing and also the quality of life of people with intellectual disabilities. Yet, there is still a need for more evidence in regards to the effectiveness of such interventions. The search for evidence raises many basic questions relating to service delivery, environmental factors, biological factors and psychosocial factors? How these various factors can either individually or collectively impact on a persons challenging behaviour and/or mental health problems? How best to support people with challenging behaviour therefore represents a continuing challenge to community services at the present time.

A person’s behaviour can be defined as “challenging” if it puts them or those around them at risk [3]. It can also have a negative impact on their ability to join in on everyday activities and may lead to a poorer quality of life. Challenging behaviour can be defined as a:

“culturally abnormal behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities” [4].

Large population studies have shown that the estimated prevalence of these severe behaviour problems is between 10% and 15% [5-10] and can persist throughout life with serious disadvantages [11-14]. Challenging behaviour and/or mental health problems are one of the main reasons why people with intellectual disabilities are admitted into hospital. Next to remaining in their own home, supported living and residential facilities are the most common model of care in Britain, North America and Australia [15,16]. For people with intellectual disabilities who present with challenging behaviour and/ or mental health problems there is evidence that living in supported community settings can lead to an improved quality of life and more participation in meaningful activities in comparison to institutional care [17]. But, when the person has challenging behaviour and/ or mental health problems there may be a range of difficulties that adversely impacts on community living [18]. Continuing behavioural and mental health problems can result in readmissions to specialist facilities for assessment and treatment with concomitant costs not only associated with these services but also in retaining the person’s place within the residential facility. Moreover, removing the person reduces the likelihood that the person and the residential services learn to manage better the behaviour when faced with future episodes. Developing skills to support people with challenging behaviour and/ or mental health problems in residential settings is very important.

However, it is not clear the features of community residential services that are most effective in managing the care of people with intellectual disabilities who challenge and also the supports that are most effective to help them do this. For example, the clinical advice available to community residential services and the skills and knowledge that exist within the settings may facilitate some community residential services to have few residents admitted to hospital. There is a clear gap in research that has examined the effectiveness of residential community based facilities in supporting people with intellectual disabilities who challenge and reduce the need for hospital admissions. Few studies have compared the effective elements that exist within the natural environment of community facilities that are successful in managing the care of clients by preventing hospital admissions. Supporting people with challenging behaviour and/or mental health problems in community residential facilities incurs significant costs that may be duplicated when such clients require additional or repeated hospital admissions. Also the social cost to the client in terms of their quality of life can also be adversely impacted upon when they are removed from a facility that to them is their home. Evidence suggests that the workforce for people with challenging behavior and/or mental health problems should possess positive attributes, understanding and be confident in their skills [19].

Previous research has revealed staff factors that may influence how well services manage people who challenge and these are: 1) Staff attributions of the causes of challenging behaviour 20-26]; 2) The emotional reaction of staff to such behaviour [26-28]; 3) The self-confidence of staff in dealing with challenging behavior and/or mental health problems [29]; and 4) Aspects related to the systems and environment in which care staff work are also important variables in determining the effectiveness of a service in supporting people who challenge [30].

Today challenging behaviour is seen as the result of an interaction effect between an individual and their environment and is no longer viewed as a built-in personality trait [31,32]. Previous studies would argue that the behaviour of an individual with intellectual disabilities, and that of the staff supporting them are intertwined [32,33] so that, for example, staff may inadvertently reinforce challenging behaviour [34] As noted by [32];

“It is not difficult to see a potential role for staff in determining the robustness of a residential service in the face of challenging behaviour. Some research has sought to tease out more subtle individual and service-related characteristics that affect the likelihood of breakdown, but few have studied staff reactions”[32].

Thus, as previously noted, narrowing the gap in our understanding of how residential community based facilities can effectively support people with intellectual disabilities who challenge and reduce the need for hospital admissions needs further attention. The situation in Northern Ireland is no different in this regard with over 2,000 people with intellectual disabilities living in various residential facilities and supported living schemes [35]. Furthermore, a recently completed rapid review clearly demonstrated that a high percentage of people with intellectual disabilities display significant levels of challenging behaviour/mental health problems [35]. Estimates from three hospitals in Northern Ireland suggests that over a 24-month period 170 people were admitted or readmitted from these facilities because of some form of severe challenging behaviour and/or mental health problems. Some facilities can support people with challenging behaviour and/or mental health problems but in other similar settings the placements of people with challenging behaviour and/or mental health problems break down. Challenging behaviour and/or mental health problems in people with intellectual disabilities remains an issue to be addressed by services with respect to the individual, their family and service commissioners and providers [36,39]. This highlights the need for more research in this area.

In fact a large-scale project is currently being carried out by researchers at the Institute of Nursing and Health Research at the University of Ulster, Northern Ireland. The project seeks to contrast aspects of staffing in community residential services to determine the extent to which they contribute in preventing unnecessary admissions to hospital. Establishing the evidence of outcomes to shape future services is a key principle. The study ‘Examining the differences in how residential facilities support people with intellectual disabilities with challenging behaviour and/or mental health problems’ is funded by the HSC R&D Public Health Agency, Northern Ireland. The project is due to be completed in April 2016 and aims to investigate potential differences in staff cultures between two groupings of community residential services for people with intellectual disabilities and challenging behaviour and/or mental health problems, one of which has experienced higher rates of hospital admissions, and one of which has successfully maintained placements in the community. The research will add to our knowledge on the features of the most effective residential settings to support people with intellectual disabilities who present with challenging behaviour and/or mental health problems. It will also assist with service commissioning and reviews, and the training of support staff.

As noted previously, increased understanding of challenging behaviour is of great importance as challenging behaviour is associated with an increased risk of negative outcomes for the person with intellectual disabilities (e.g. physical injury, social exclusion, isolation, placement breakdown, etc.) [40] as well as staff (e.g. negative emotion, physical injuries, stress, change of job, loss of confidence, psychological distress, etc.) [28,41]. Furthermore, challenging behaviour can impact negatively on other clients and staff-service-user relationship [41]. It is hoped that further research will narrow the gap in our understanding and highlight factors that lead to effective staff teams within residential settings and higher staff morale that ultimately benefits clients. There is a need to identify the best means by which multidisciplinary and multiagency working can be facilitated to support community residential facilities. Further recommendations need to be made in respect to how future community residential services for people with challenging behaviour and/or mental health problems should be organized and delivered. Further research will help future services to be organized in an effective way and highlight changes needed in current services to align them with best evidence-based practice.

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