2 Research recommendations

The Guideline Development Group has made the following recommendations for research, based on its review of evidence, to improve NICE guidance and the care and treatment people receive in the future.

2.1 Preventing behaviour that challenges from developing in children aged under 5 years with a learning disability

Can positive behaviour support provided for children aged under 5 years with a learning disability reduce the risk of developing behaviour that challenges?

Why this is important

Behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers. It is a common reason for residential placement with associated high costs. Positive behaviour support aims to reduce behaviour that challenges and increase quality of life through teaching new skills and adjusting the environment to promote positive behaviour changes. Early intervention with children at risk of developing behaviour that challenges offers an opportunity to significantly enhance their life and that of their family members or carers.

The question should be addressed by a programme of research that includes:

  • developing interventions to prevent behaviour that challenges from developing in children aged under 5 years

  • assessing the feasibility of the formal evaluation of the interventions in a randomised controlled trial

  • testing the clinical and cost effectiveness of the interventions in a large scale randomised controlled trial with long‑term follow‑up

  • evaluating the implementation of the interventions in routine care.

2.2 Interventions to reduce the frequency and extent of moderate to severe behaviour that challenges in community settings

Are interventions based on the science and practice of applied behaviour analysis or antipsychotic medication, or a combination of these, effective in reducing the frequency and severity of behaviour that challenges shown by adults with a learning disability?

Why this is important

Behaviour that challenges is common in adults with a learning disability and can have a considerable impact on them and their family members or carers. It is also a common reason for hospital or residential placement. There is limited evidence for the effectiveness of either applied behaviour analysis or antipsychotic medication, or a combination of these in community settings. Little is known about which people respond best to which interventions or about the duration of the interventions. There is considerable evidence of the over use of medication and of limited skills and competence in delivering behavioural interventions.

The question should be addressed by a programme of research evaluating these interventions that includes:

  • developing a protocol for assessing moderate to severe behaviour that challenges that:

    • characterises the nature and function of the behaviour

    • assesses all coexisting problems that may contribute to the behaviour developing or being maintained

  • developing protocols for delivering and monitoring the interventions to be tested (including how any currently provided interventions will be stopped)

  • assessing the feasibility of the formal evaluation of the interventions in a randomised controlled trial (in particular, recruitment)

  • testing the comparative clinical effectiveness (including moderators and mediators) and cost effectiveness of the interventions in a large‑scale randomised controlled trial.

2.3 Locally accessible care

Does providing care where people live compared with out-of-area placement lead to improvements in both the clinical and cost effectiveness of care for people with a learning disability and behaviour that challenges?

Why this is important

Many out‑of‑area care placements for people with a learning disability and behaviour that challenges are a long way from their home. This can have a considerable impact, limiting a family member or carer's ability to care for the person and leading to poorer outcomes and increased costs. It is widely recognised that locally accessible care settings could be beneficial and could reduce costs but there is no strong empirical evidence to support this. In the absence of such evidence significant numbers of out-of-area care placements continue to be made.

The question should be addressed by a programme of research that includes:

  • a needs assessment and the care costs of a consecutive cohort of 250 people who have been placed in out‑of‑area care in a 2‑year period

  • developing standards for a range of support programmes designed to meet people's needs, which would provide detailed information on:

    • the needs to be meet

    • the nature of the care environments

    • the support, including specialist staff, needed

  • testing the clinical and cost effectiveness of 'close to home' or home‑based care that meet the developed standards (compared with consecutive cohorts in out‑of‑area placements).

2.4 Factors associated with sustained, high-quality residential care

What factors (including service organisation and management, staff composition, training and supervision, and the content of care and support) are associated with sustained high‑quality residential care for people with a learning disability and behaviour that challenges?

Why this is important

The quality of residential care for people with a learning disability and behaviour that challenges remains an issue of national concern. Reviews (most recently of Winterbourne View Hospital) have identified failings in care. Although recommendations have been made this has not led to a significant and sustained improvement in care. It is important to understand how improvement can be maintained.

The question should be addressed by a programme of research that includes:

  • a systematic review of the factors associated with sustained and beneficial change in health and social care organisations

  • designing service‑level interventions to support the implementation of standards of care developed from the systematic review

  • testing the clinical and cost effectiveness of service‑level interventions in residential units through the formal evaluation of a quality improvement programme established to introduce the new standards (the follow‑up period should be for a minimum of 3 years after the implementation of the intervention).

  • National Institute for Health and Care Excellence (NICE)