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.

1 Models of person-centred support

What models of delivering person-centred support are effective and cost effective for people with a learning disability and behaviour that challenges, and their families and carers?

What are the views and experiences of people with a learning disability and behaviour that challenges and their family members and carers, of different models of delivering person-centred support?

Why this is important

Person-centred support is the current recommended approach and is at the centre of this service guideline. However, there is little published research about what configurations of services and resources provide the best person-centred support for people with a learning disability and behaviour that challenges, and their families and carers. There is also limited research from the point of view of people with a learning disability and their families and carers on what good person-centred support looks like, how it can be measured or benchmarked or what it means for them.

2 Supporting family members, carers and staff

What types of services or approaches are effective in supporting family members, carers and staff to be resilient and able to provide care and support to people with a learning disability and behaviour that challenges?

Why this is important

Enabling family members, carers and staff to provide continuing care and support can help prevent placements from breaking down, which can lead to out-of-area placements. Investment in carers, support networks, initiatives that support independent living, and community networks are key to helping people develop greater resilience. This is especially important if new approaches to service delivery, such as personalisation, are to succeed. However, there is no direct empirical evidence of the social and economic benefits associated with investment in such approaches and services.

3 Models of supported living

What is the effectiveness and cost effectiveness of models of shared, supported living, such as Shared Lives?

What are the views and experiences of people sharing their home and people who live with them under programmes such as Shared Lives?

Why this is important

It is important that people with a learning disability and behaviour that challenges have more choice and control over where they live. Models of supported living, such as Shared Lives, are promising models for people with a learning disability. However, the support needs of people with a learning disability and behaviour that challenges are more complex and there is very limited evidence about which types of supported living are effective specifically for them. It would be useful to know what kinds of supported living are acceptable and feasible for people with a learning disability and behaviour that challenges and their families and carers, as well as for Shared Lives families.

4 Effective components of integrated regional services for people with a learning disability and behaviour that challenges

What are the effective components of an integrated regional service for people with a learning disability and behaviour that challenges across health and social care (including pooling budgets and other resources)?

What are the barriers and facilitators to pooling budgets and other resources across regions?

Why this is important

The Winterbourne View Review Action Group and the Transforming care programme recommended that health and social care services should pool budgets. However, reports from the National Audit Office highlight that there has been little evidence of this happening in practice. Research is needed to know what mechanisms enable or stop this practice from happening, and whether the practice results in better outcomes for people with a learning disability.

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  • National Institute for Health and Care Excellence (NICE)