Providing services in the United Kingdom to people with an intellectual disability who present behaviour which challenges: A review of the literature

Abstract

There is ongoing debate about the best model of service provision for people with an intellectual disability who present severe behavioural challenges. The present paper reviewed research which evaluated a range of UK service provision in terms of impact on challenging behaviour and other quality of life indices. A literature search was carried out for English language papers from 1990 to 2010 using a range of databases. Secondary searches were carried out from references of relevant papers. Very few evaluations were found. The available research indicates that, on the whole, specialist congregate services for individuals with challenging behaviour appear to use more restrictive approaches which have limited effect on reducing challenging behaviour. The evidence for peripatetic teams is somewhat unclear. The two studies reviewed showed positive outcomes, but both had limitations that made it difficult to generalize the results. A similar limitation was found with the sole evaluation of a community based service. It is unlikely that one model of service provision will meet the needs of all individuals, however, more robust evaluations are required of existing service models to allow commissioners, service users, their families and carers to make fully informed choices about effective services for those who challenge.

"I'm not a patient, I'm a person": The experiences of individuals with intellectual disabilities and challenging behavior—A thematic synthesis of qualitative studies.

“…This led to a cycle of challenging behavior in which the residential settings and restrictive interventions became causation factors for a repeat occurrence of challenging behavior (see Figure 1). A recent review concluded that specialist services used more restrictive approaches, with limited effect on frequency of challenging behavior (McKenzie, 2011). Here too, for the first time in a synthesis of qualitative research, we see the same message from individuals with ID and challenging behavior: Restrictive interventions do not reduce challenging behavior in the long term.…”

“…A recent review of services for individuals with ID and challenging behavior concluded that specialist services for this population used more restrictive procedures, with limited effect on the instances of challenging behavior within that service (McKenzie, 2011). This, together with the consistent reports of physical and emotional distress caused by restrictive practices in this review, suggests that support services need to approach their use with extreme caution.…”

Outcomes from a community‐based Positive Behavioural Support team for children and adults with developmental disabilities

“…As a result, research into the implementation of PBS by specialist community teams remains at the preliminary stage, with inconsistent results, and dearth of data on PBS impact on QoL (Dunlap & Carr, ; Lowe, Felce, & Blackman, ; Mckenzie, ; McLean et al, ). Although it has been suggested that PBS can improve QoL in some studies (Carr et al, ), there is currently no evidence to support this suggestion as this outcome has not been systematically included in evaluations of specialist PBS teams (cf, LaVigna & Willis, ).…”

The views of carers about support for their family member with an intellectual disability: With a focus on positive behavioural approaches

“…Cooper et al., ). While past approaches to such behaviour have often been primarily reactive, included restrictive elements such as physical restraint, and emphasised medication over psychological and behavioural approaches (for an overview, see McKenzie, ), over the past three decades positive, proactive and preventative approaches have emerged which acknowledge the functional nature of the behaviour. This has culminated in the adoption and promotion of Positive Behaviour Support (PBS) (Carr, ; LaVigna & Willis, ) in intellectual disability services in the United Kingdom and elsewhere.…”