Title: Increasing the Quality of Health Service Support for Children with Intellectual and Developmental Disabilities who display Behaviour Problems
Funder: Department of Health and Social Care

Abstract: Background: Children with intellectual and developmental disabilities (IDD) are at high risk of developing mental health conditions, including behaviour problems like aggression and self-injury. These behaviours are persistent, have a negative impact on the lives of children and others and are associated with high support costs to the NHS throughout the lifetime. Positive Behavioural Support has been recommended as a best practice framework in national guidance for supporting people with IDD and problem behaviour, including guidance produced by NHS England and the LGA (2014). The evidence base for PBS is however limited because most research has been conducted with adults with IDD or has taken place outside of the UK and has not tended to investigate the full breadth of treatment outcomes or fully consider the viewpoints of children with IDD and their families regarding such outcomes. In addition there appear to be few NHS child services delivering PBS but this has not been subject to a full investigation and there have been no attempts to formally evaluate the and assess feasibility of implementing a PBS pathway in such services. Aims: The current research plan combines 5 studies that aim to: (1) Increase knowledge and use of a full range of available measures for assessing PBS outcomes in child services; (2) Provide insights into the views of children with IDD and their families regarding treatment outcomes in such services; (3) develop improved ways of assessing PBS outcome for children in NHS services by creation of a new PROM; (4) gain a comprehensive overview of service availability and quality for children with IDD in England; (5) create a PBS pathway for such services and assess feasibility and initial effectiveness of implementing this. Methods: Study 1 consists of a systematic review of previous research concerning outcome measures for PBS. The statistical qualities of the measures and their appropriateness for use in applied settings will be assessed. Study 2 involves a qualitative study with thematic analysis whereby children with IDD and their families are interviewed about support received for the child's behavior problem. Study 3 will develop a new outcome tool via a Delphi-Panel method. Test-retest reliability and concurrent reliability will be tested by completing this and other measures with a group of family carers of children with IDD. Study 4 will create an electronic survey about service deliveyr and use of PBS based on previously published guidance regarding PBS frameworks and competencies. This will be sent to NHS child services to be completed by staff in two regions of England. Study 5 will create a PBS clinical pathway and train 4 NHS services to implement this for families of children with IDD they support. A mixed within and between groups design will be used over a 12 month period with random assignment to the order in which services are trained. Outcomes for families and their children will be assessed by completing measures at regular intervals prior to and following implementation of the pathway and additional focus groups will be completed with staff to assess feasibility issues. Benefits to NHS, patients and the public: Taken together this group of studies will increase the scope, effectiveness and social validity of outcome measurements within NHS services that support children with IDD and behaviour problems (and their families); establish further first hand insights into the views and needs of children with IDD and their families to inform future service development and evaluation; gain a thorough account of the availability and quality of current services to inform future commissioning and develop a pathway for implementing best practice supports through use of PBS in NHS child services.

Lay abstract: Background: Intellectual and developmental disabilities (IDD) are life-long conditions that affect a person's ability to learn and carry out every day activities. Children with IDD's are at greater risk of developing mental health problems compared to children without IDD. This includes behavior problems like aggression and causing injury to oneself. These kinds of behaviors are physically harmful to the child and others who care for them. They also lead to high rates of stress amongst families and increase the chance that children will be subject to restrictive treatment by others and exclusion from the community. The cost of providing supports for children with IDD can be very high and without good support behavior problems like this tend to continue into adulthood. Positive Behavioural Support (PBS) has a strong evidence base for supporting people with IDD and behavior problems and has been advocated for in recent national guidance and policy. However, research in this field is limited for a number of reasons: (1) Most research has been carried out with adults rather than children with IDD; (2) there is little research in the UK about PBS and there appear to be very few NHS services for children providing PBS; (3) the range of measures used in PBS research may not capture all of the treatment outcomes; (4) the viewpoints of families and children have not always been represented in research about PBS. Aim(s): The research plan is based on 5 linked studies. Taken together these aim to find better ways to support families of children with intellectual and developmental disabilities (IDD) who have behavior problems. Study 1 aims to review measures that have previously been developed in PBS research. Study 2 aims to gain the views of children with IDD and their families about which treatment outcomes they value. Study 3 aims to develop a further PBS outcome tool to incorporate family viewpoints. Study 4 aims to gain a full picture of the availability of PBS in NHS services for children with IDD. Study 5 aims to develop and implement a PBS clinical pathway into a number of NHS services and evaluate the initial impact of doing this.Design and methods used: Study 1 will involve identifying and reviewing previous research about outcome measures for PBS. The statistical features of the measures and their clinical usefulness will be assessed. Study 2 will interview families of children with IDD and these children themselves about support received for the child's behavior problem. Communication methods will be adapted to support children with IDD to participate. Study 3 will develop a new outcome tool by bringing together a group of experts. The statistical properties of the measure (reliability) will be tested by completing this and other measures with a group of family carers of children with IDD. Study 4 will create an electronic survey about service delivery and use of PBS. This will be sent to NHS services that support children with IDD to be completed by staff who work there. Study 5 will create a PBS clinical pathway and train 4 NHS services to implement this for families of children with IDD they support. Outcomes for these families and their children will be assessed by completing measures at regular intervals prior to and following implementation of the pathway.Patient and Public Involvement: The applicant has already established an advisory group that includes family carer membership and representation from the chair of a national charity that supports people with IDD and their families. The applicant will continue to work with this group and extend membership to a wider number of patients (including someone with an IDD) and patient representatives. The group will be consulted at regular intervals throughout the research process to finalise aspects of design and be involved in the production of materials used in individual studies (including information sheets). Dissemination: Findings from each of the 5 studies involved in the research plan will be disseminated by the production of research publications in high impact journals. In addition for each study a product will be created for the use of professionals working in/for NHS services. This includes a summary document detailing available outcome tools and uses and the newly developed outcome tool (study 1 and 3). Finally, for each study an accessible document will be created and disseminated to family carer/patient groups via national charities and networks. Additionally findings from the research will be presented at international conference and in small group presentations to research participants.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH