Excerpt

This guideline has been developed to advise on the management and support of people with a learning disability and behaviour that challenges, and prevention of behaviour and challenges. This guideline covers children (aged 12 years or younger), young people (aged 13 to 17 years) and adults (aged 18 years or older).

The guideline recommendations have been developed by a multidisciplinary team of healthcare professionals, people who care for those with a learning disability and behaviour that challenges and guideline methodologists after careful consideration of the best available evidence. It is intended that the guideline will be useful to clinicians and service commissioners in providing and planning high-quality care for people with a learning disability and behaviour that challenges while also emphasising the importance of the experience of care for people with a learning disability and behaviour that challenges and their families and carers.

Although the evidence base is rapidly expanding, there are a number of major gaps. The guideline makes a number of research recommendations specifically to address gaps in the evidence base. In the meantime, it is hoped that the guideline will assist clinicians, and people with a learning disability and behaviour that challenges and their families and carers, by identifying the merits of particular treatment approaches where the evidence from research and clinical experience exists.

Contents

• Guideline Development Group members and National Collaborating Centre for Mental Health (NCCMH) review team
• Acknowledgments
• 1. Preface
  • 1.1. National clinical guidelines
  • 1.2. The national Challenging Behaviour and Learning Disabilities guideline
• 2. Introduction
  • 2.1. Definitions and terminology
  • 2.2. Prevalence
  • 2.3. Co-occurrence and persistence
  • 2.4. Associated characteristics
  • 2.5. Causes
  • 2.6. Current care in the UK
  • 2.7. Economic costs
• 3. Methods used to develop this guideline
  • 3.1. Overview
  • 3.2. The scope
  • 3.3. The Guideline Development Group
  • 3.4. Review protocols
  • 3.5. Clinical review methods
  • 3.6. Health economics methods
  • 3.7. Using NICE evidence reviews and recommendations from existing NICE clinical guidelines
  • 3.8. From evidence to recommendations
  • 3.9. Stakeholder contributions
  • 3.10. Validation of the guideline
• 4. Experience of care for service users, families and carers
  • 4.1. Introduction
  • 4.2. Review question: In people with a learning disability and behaviour that challenges, what are their experiences of having a learning disability and behaviour that challenges, of access to services, and of treatment?
  • 4.3. Review question: For families and carers of people with a learning disability and behaviour that challenges, what are their experiences of caring for people with a learning disability and behaviour that challenges, and what support is available for families, partners and carers?
  • 4.4. Expert advisory group validation
  • 4.5. Recommendations and link to evidence
• 5. Interventions for carers
  • 5.1. Introduction
  • 5.2. Review question: In families and carers of people with a learning disability and behaviour that challenges, what are the benefits and potential harms of interventions aimed at improving their health and wellbeing?
  • 5.3. Review question: What are the benefits and potential harms of strategies aimed at engaging the families and carers of people with a learning disability and behaviour that challenges as a resource in the design, implementation and monitoring of interventions for people with a learning disability and behaviour that challenges?
  • 5.4. Recommendations and link to evidence
• 6. Organisation and delivery of care (including training)
  • 6.1. Introduction
  • 6.2. Review question: In people with a learning disability and behaviour that challenges, what are the effective models for transition between services?
  • 6.3. Review question: What are the benefits and potential harms of training and education programmes to allow health and social care professionals and carers to provide good-quality services and carry out evidence-based interventions designed to reduce or manage behaviour that challenges displayed by people with a learning disability?
  • 6.4. Recommendations and link to evidence
• 7. Identification of behaviour that challenges
  • 7.1. Introduction
  • 7.2. Review question: In people with a learning disability, what are the circumstances, risk factors and antecedents associated with the development of behaviour that challenges?
  • 7.3. Review question: In people with a learning disability, what is the utility of methods and tools used to assess the circumstances, risk factors and antecedents associated with the development of behaviour that challenges?
  • 7.4. Recommendations and link to evidence
• 8. Assessment
  • 8.1. Introduction
  • 8.2. Review question: In people with a learning disability, what are the key components of, and the most effective structure for, an assessment of the behaviour that challenges across a range of settings?
  • 8.3. Review question: In people with a learning disability and behaviour that challenges, what is the utility of methods and tools for assessment?
  • 8.4. Review question: In carers of people with a learning disability and behaviour that challenges, what is the utility of methods used to assess and monitor their capacity to support the person?
  • 8.5. Recommendations and link to evidence
• 9. Interventions aimed at preventing behaviour that challenges
  • 9.1. Introduction
  • 9.2. Review question: In people with a learning disability, what are the benefits and potential harms of interventions aimed at preventing the development of behaviour that challenges?
  • 9.3. Review question: In people with a learning disability, and their carers, what are the benefits and potential harms of interventions aimed at reducing health risks and increasing understanding of physical or mental health problems in relation to the prevention or management of the behaviour that challenges?
  • 9.4. Recommendations and link to evidence
• 10. Environmental interventions
  • 10.1. Introduction
  • 10.2. Review question: In people with a learning disability and behaviour that challenges, what are the benefits and potential harms associated with environmental changes aimed at reducing and managing behaviour that challenges?
  • 10.3. Recommendations and link to evidence
• 11. Psychosocial interventions
  • 11.1. Introduction
  • 11.2. Review question: In people with a learning disability and behaviour that challenges, what are the benefits and potential harms associated with psychosocial interventions aimed at reducing and managing behaviour that challenges?
  • 11.3. Recommendations and link to evidence
• 12. Pharmacological interventions
  • 12.1. Introduction
  • 12.2. Review question: In people with a learning disability and behaviour that challenges, what are the benefits and potential harms associated with pharmacological interventions aimed at reducing and managing behaviour that challenges?
  • 12.3. Recommendations and link to evidence
• 13. Reactive strategies
  • 13.1. Introduction
  • 13.2. Review question: In people with a learning disability and behaviour that challenges, what are the benefits and potential harms of reactive strategies aimed at managing behaviour that challenges?
  • 13.3. Recommendations and link to evidence
• 14. Summary of recommendations
  • 14.1. General principles of care
  • 14.2. Physical healthcare
  • 14.3. Support and interventions for family members or carers
  • 14.4. Early identification of the emergence of behaviour that challenges
  • 14.5. Assessment of behaviour that challenges
  • 14.6. Behaviour support plan
  • 14.7. Psychological and environmental interventions
  • 14.8. Medication
  • 14.9. Reactive strategies
  • 14.10. Interventions for coexisting health problems
  • 14.11. Interventions for sleep problems
• 15. References
• 16. Abbreviations
• Appendices
  • Appendix A. Scope for the development of the clinical guideline
  • Appendix B. Declarations of interests by Guideline Development Group members
  • Appendix C. Special advisors to the Guideline Development Group
  • Appendix D. Stakeholders who submitted comments in response to the consultation draft of the guideline
  • Appendix E. Researchers contacted to request information about unpublished or soon-to-be published studies
  • Appendix F. Analytic framework, review questions and review protocols
  • Appendix G. Research recommendations
  • Appendix H. Clinical evidence – search strategies
  • Appendix I. Health economic evidence – search strategies
  • Appendix J. Clinical evidence – completed methodology checklists for assessment studies
  • Appendix K. Clinical evidence – examples of study characteristics data extraction and methodology checklist
  • Appendix L. Clinical evidence – study characteristics, measure characteristics and excluded evidence for all assessment studies
  • Appendix M. Clinical evidence – study characteristics, methodology checklists and outcomes for risk factor review
  • Appendix N. Clinical evidence – study characteristics, methodology checklists, outcomes and comparisons for all intervention studies
  • Appendix O. Clinical evidence – GRADE evidence profiles for all studies
  • Appendix P. Clinical evidence – forest plots for all studies
  • Appendix Q. Clinical evidence – excluded studies
  • Appendix R. Health economic evidence – completed health economics checklists
  • Appendix S. Health economic evidence – evidence tables
  • Appendix T. Health economic evidence – economic profiles
  • Appendix U. Service user focus-group report
  • Appendix V. Carer focus-group report
  • Appendix W. Additional health economic results

Disclaimer: Healthcare professionals are expected to take NICE clinical guidelines fully into account when exercising their clinical judgement. However, the guidance does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of each patient, in consultation with the patient and/or their guardian or carer.