NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.
National Collaborating Centre for Mental Health (UK). Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges. London: National Institute for Health and Care Excellence (NICE); 2015 May. (NICE Guideline, No. 11.)
Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges.
Show details5.1. Introduction
The economic value of unpaid carers in the UK has been estimated at £119 billion per year (Buckner & Yeandle, 2011) with approximately 15% of all carers in the UK caring for someone with a learning disability (The Princess Royal Trust for Carers, 2004). It is estimated that more than 65% of people with a learning disability in England are living with their parents or another relative (Emerson & Hatton, 2008). A large number of carers are therefore faced with meeting the needs of their family member, partner or friend often with minimum support from statutory services (see Section 4.1).
Family members who care for adults with a learning disability and behaviour that challenges are a vulnerable group. This group has been shown to be at increased risk for a variety of negative outcomes including poorer mental and physical health and reduced socioeconomic resources compared with the general population (Gallagher et al., 2008; Hastings, 2002b; Most et al., 2006).
A recent systematic review of carers of family members with a learning disability and behaviour that challenges (Griffith & Hastings, 2013) revealed that carers performed a complex juggling act, managing day-to-day general care demands and the particular stresses associated with behaviour that challenges (for example, physical injury and fear), battling with services or the general lack of suitable support from services, and preparing for a future when they would no longer be able to provide care and support to their relative. It was also clear from this review that these considerable demands were managed in the context of a strong commitment to the person with a learning disability.
Providing adequate support and appropriate interventions to carers first requires that they are identified. At present there is no clear service that has been tasked with this role, although some improvements have been made in recent years. Social services have a statutory duty to offer carer's assessments but this only benefits a number of families and resources may be limited to implement the outcome of the assessment.
GPs are now encouraged to identify patients who have a role as a carer. They can offer additional support in the form of carer packs and seasonal flu jabs, but records can be patchy and often do not have sufficient information. GPs may not always recognise the burden of caring for someone with a learning disability and behaviour that challenges. There will also be families who no longer offer direct care (because their child has grown up and left home) who may still have significant additional needs but are unlikely to be identified in the records.
Families often report fears for the future care of their child and worry that services might fail them because previous experiences may not always have been adequate. Current services can appear to have a bias to crisis management with fewer resources being made available for early intervention or prevention. Without a commitment to reduce the risk of behaviour that challenges, problems have to escalate before additional support is offered. Response to crises can be inadequate and too late and result in placement breakdown. This can lead to people moving to inappropriate placements, often at some distance from the family home, for an unnecessarily long time.
Systematic reviews (Griffith & Hastings, 2013) have suggested a need for trusted partnership between professionals/services and family members, increased skills for family members, and the need for support in coping with the emotional demands of caring for an adult with a learning disability and behaviour that challenges. Parents, in particular, reported being socially isolated, with almost their whole existence focused on supporting their son or daughter.
Intervention and support for parents of children (rather than adults) with a learning disability and behaviour that challenges have been subject to some research attention. In particular, behavioural parenting training methods have been applied to parents of children and subjected to evaluations in RCTs (McIntyre & Brown, 2013). As yet, no RCT has been undertaken with families with children who are now adults.
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?
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 13. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
Table 13
Clinical review protocol summary for the review of interventions aimed at improving families and carers' health and wellbeing.
5.2.1. Clinical evidence
5.2.1.1. Cognitive behavioural interventions for families and carers of people with a learning disability and behaviour that challenges versus any control
There were 10 RCTs (N = 837) that met the eligibility criteria for this review: Feinberg 2014 (Feinberg et al., 2014), Gammon 1991 (Gammon & Rose, 1991), Greaves 1997 (Greaves, 1997), Kirkham 1990 (Kirkham & Schilling, 1990), Neece 2014 (Neece, 2014), Nixon 1993 (Nixon & Singer, 1993), Schultz 1993 (Schultz et al., 1993), Singer 1988 (Singer et al., 1988), Singer 1989 (Singer et al., 1989) and Wong 2010 (Wong & Poon, 2010). Of the 10 eligible studies, 7 (N = 610) included sufficient data to be included in a meta-analysis and 3 (N = 147) included critical outcome data that could not be included in a meta-analysis because of the way the data had been reported (Gammon 1991; Greaves 1997; Neece 2014); a brief narrative synthesis is therefore given to assess whether the findings support or refute the meta-analyses. Greaves 1997 was a 3-armed trial (N = 54); for the purposes of this review only the experimental and no treatment control group will be utilised (N = 37). An overview of the trials included in the meta-analysis can be found in Table 14. Further information about both included and excluded studies can be found in Appendix N and Appendix Q, respectively.
Table 14
Study information table for trials included in the meta-analysis of cognitive behavioural interventions for families and carers of people with a learning disability and behaviour that challenges versus any control.
Summary of findings can be found in Table 15. The full GRADE evidence profiles and associated forest plots can be found in Appendix O and Appendix P.
Table 15
Summary of findings table for the review of cognitive behavioural interventions for families and carers of people with a learning disability and behaviour that challenges versus any control.
No data were available for the critical outcomes of family or carer satisfaction.
5.2.1.2. Support for families and carers of people with a learning disability and behaviour that challenges versus any control
There was 1 RCT (N = 80) that met the eligibility criteria for this review: Davis 1991 (Davis & Rushton, 1991). An overview of this trial can be found in Table 16. Further information about both included and excluded studies can be found in Appendix N and Appendix Q, respectively.
Table 16
Study information table for trials included in the meta-analysis of support and psychoeducation for families and carers versus any control.
Summary of findings can be found in Table 17. The full GRADE evidence profiles and associated forest plots can be found in Appendix O.
Table 17
Summary of findings table for the review of support for families and carers of people with a learning disability and behaviour that challenges versus any control.
No data were available for the critical outcomes of family and carer quality of life, mental and psychological health, and satisfaction.
5.2.1.3. Psychoeducation for families and carers of people with a learning disability and behaviour that challenges versus any control
There were 2 RCTs (N = 180) that met the eligibility criteria for this review and were included in a meta-analysis: Bilgin 2009 (Bilgin & Gozum, 2009), Yildirim 2013 (Yildirim et al., 2013). An overview of the trials included can be found in Table 16. Further information about both included and excluded studies can be found in Appendix and Appendix Q, respectively,
Summary of findings can be found in Table 18. The full GRADE evidence profiles and associated forest plots can be found in Appendix O.
Table 18
Summary of findings table for the review of psychoeducation for families and carers of people with a learning disability and behaviour that challenges versus any control.
No data were available for the critical outcomes of family and carer quality of life, stress and resilience, and satisfaction.
5.2.1.5. Mindfulness versus any control for paid carers of people with a learning disability and behaviour that challenges
There were 2 RCTs (N = 194) that met the eligibility criteria for this review and were included in a meta-analysis: Bethay 2013 (Bethay et al., 2013), McConachie 2014 (McConachie et al., 2014). An overview of the trials can be found in Table 19. Further information about both included and excluded studies can be found in Appendix and Appendix Q, respectively.
Table 19
Study information table for trials included in the meta-analysis of mindfulness interventions for paid carers of people with a learning disability and behaviour that challenges versus any control.
Summary of findings can be found in Table 20. The full GRADE evidence profiles and associated forest plots can be found in Appendix O.
Table 20
Summary of findings table for the review of mindfulness versus any control for paid carers of people with a learning disability and behaviour that challenges.
No evidence was identified in relation to the specific subgroups identified in the review protocol.
No data were available for the critical outcomes of family and carer quality of life, and satisfaction.
5.2.3. Economic evidence
No studies assessing the cost effectiveness of interventions for families and carers of people with a learning disability and behaviour that challenges were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
5.2.4. Clinical evidence statements
5.2.4.1. Cognitive behavioural interventions versus any control for families and carers
- Moderate-quality evidence from 5 studies (N = 428) suggested that the cognitive behavioural intervention was more effective than the control in reducing depression in families and carers at the end of the intervention. At up to 2 years' follow-up, the intervention was similarly effective, but the evidence was from 2 studies (N = 130) and graded as low quality.
- Low to very low-quality evidence from single studies with 111 participants at most, suggested that the cognitive behavioural intervention had a positive impact on other mental and psychological outcomes, quality of life and stress when compared with control.
- 3 trials could not be included in the meta-analysis (N = 130). The authors of both Greaves 1997 (N = 37) and Neece 2014 (N = 51) reported that the cognitive behavioural intervention was more effective than no-treatment control in reducing stress. Neece 2014 also reported that the mindfulness intervention was more effective than waitlist control in reducing depression. Conversely, Gammon 1991 (n = 42) reported no overall effect of the cognitive behavioural intervention, when compared with control, on dimensions of parental stress at the end of the intervention.
5.2.4.2. Support versus any control for families and carers
- Very low-quality evidence from a single study (N = 28) suggested that support was more effective than control in reducing stress at end of the intervention.
5.2.4.3. Psychoeducation versus any control for families and carers
- Very low-quality evidence from single studies (N = 75-90) suggested that psychoeducation was more effective than control in reducing depression and burnout at 4 to 8 weeks' follow-up.
5.2.4.4. Mindfulness versus any control for paid carers
- Very low-quality evidence from up to 2 studies (N = 154) demonstrated some benefit in improving mental ill health of a mindfulness intervention when compared with control at the end of the intervention, but was inconclusive regarding mental wellbeing, stress and burnout.
5.2.5. Economic evidence statements
No economic evidence on interventions for families and carers of people with a learning disability and behaviour that challenges is available.
5.2.6. Recommendations and link to evidence
See section 5.4 for the recommendations and link to evidence relating to this section.
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?
The review protocol summary, including the review question and the eligibility criteria used for this section of the guideline, can be found in Table 21. A complete list of review questions and review protocols can be found in Appendix F; further information about the search strategy can be found in Appendix H.
Table 21
Clinical review protocol summary for the review of strategies to engage families and carers as a resource in the design, implementation and monitoring of interventions.
5.3.1. Clinical evidence
The evidence base available for this section of the guideline was anticipated to be, and indeed found to be, extremely poor. No RCTs or systematic reviews were identified in the search. Consequently the GDG decided to adopt a formal method of consensus (the modified nominal group technique) to identify areas of agreement on which to base guidance (see Chapter 3 for further details about the method).
A recent literature review on the area was used to develop the consensus questionnaire (see Appendix N): McIntyre 2013 (McIntyre & Brown, 2013). The literature review concerned recommended strategies for engaging families and carers as a resource in the design, implementation and monitoring of interventions for people with a learning disability and behaviour that challenges. These strategies were adapted into 15 separate statements. In order to address the various stages of behaviour that challenges displayed by people with a learning disability, statements were split to address 3 levels: (1) universal prevention (all families and carers of people with a learning disability); (2) selective prevention (families and carers of people with a learning disability whose risk for developing behaviour that challenges is above average); and (3) indicated prevention or intervention strategies (families and carers of people with a learning disability who have, or have specific risk factors for, behaviour that challenges).
The 16 GDG members' ratings of each of the 15 statements were compiled and ranked 1 to 15. The results of the consensus are presented in Table 22.
Table 22
Consensus results for statements concerning proposed strategies to engage families and carers as a resource in the design, implementation and monitoring of interventions.
Those consensus statements ranked in the upper half of the ranking table (rank 1st to 6th) were used to form the basis for the clinical evidence statements.
5.3.2. Clinical evidence statements
- At the level of universal prevention (that is all parents of a child with a learning disability), the GDG supported the use of: (a) parent education and family behavioural supports (materials aimed at promoting positive parenting practices and behaviour management); and (b) assessment (developmental and behavioural screening surveillance, and monitoring).
- At the level of selective prevention, the GDG supported the use of: (a) formal social support (including disability-specific services and specialty care); (b) behaviour-specific assessments (for example, direct observations, rating scales); and (c) stress management (self-care and healthy lifestyle).
- At the level of indicated prevention and intervention strategies, the GDG supported the use of: (a) formal social support (including disability-specific services and specialty care); and (b) assessment (functional assessments of behaviour or experimental functional analyses developed to inform behavioural treatment).
5.3.3. Economic evidence
No economic evidence strategies aimed at engaging families and carers as a resource in the design, implementation and monitoring of interventions for people with a learning disability and behaviour that challenges was identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.
5.3.4. Economic evidence statements
No economic evidence on strategies aimed at engaging families and carers as a resource in the design, implementation and monitoring of interventions for people with a learning disability and behaviour that challenges is available.
5.4. Recommendations and link to evidence
5.4.1. Support and interventions for family members or carers
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The GDG agreed that the following 4 outcomes for families and carers were critical: (1) quality of life, (2) mental and psychological health, (3) stress and resilience, and (4) satisfaction. |
| Trade-off between clinical benefits and harms | The GDG agreed that based on the available data there was reasonable evidence that some interventions for families and carers can have important benefits. The GDG also agreed by informal consensus to make a recommendation that all parents and carers should be made aware of and offered a carer's assessment. Although there was evidence for the treatment of depression only, the GDG was of the view that for those with identified mental health problems, healthcare professionals should consider providing, or referring for, interventions in line with existing NICE guidelines. |
| Trade-off between net health benefits and resource use | No economic evidence is available. Provision of interventions for families and carers has some resource implications. However, the GDG expressed the opinion that effective interventions for families and carers are likely value for money since they improve outcomes for families and carers and may consequently reduce healthcare resource utilisation associated with mental and psychological health problems experienced by families and carers, including depression and anxiety. |
| Quality of evidence | Although evidence came from RCTs, it was generally downgraded to low or very low quality because of risk of bias and small sample sizes. The notable exception to this was for the review of CBT (5 RCTs with over 400 participants). Nevertheless, this evidence was downgraded to moderate quality because of some concerns about risk of bias. It should also be noted that most studies did not specify behaviour that challenges as an inclusion criteria. However, the GDG felt that given the risk of behaviour that challenges in people with a learning disability, there was no need to downgrade the evidence for indirectness. |
| Other considerations | Although carers' assessments and NICE-recommended interventions should be readily accessible for all carers, the GDG noted from the review of carer experience that these options were often not available to carers of people with a learning disability and therefore considered that recommendations in this area were needed to improve carers' experience. During consultation, a number of stakeholders commented that it is important that families and carers receive skills training and emotional support to enable them to participate in and support interventions for the person with a learning disability and behaviour that challenges. The GDG agreed and expanded recommendation 4 to include this. |
5.4.2. Involving families and carers
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The GDG agreed that the following were critical outcomes: severity, frequency and duration of the targeted behaviour that challenges, quality of life, family and carer stress and resilience, use of inpatient placements, and service user and carer satisfaction. |
| Trade-off between clinical benefits and harms | Because of the paucity of evidence, the GDG used a formal consensus approach to determining strategies to engage families and carers as a resource in the design, implementation and monitoring of interventions. These strategies were grouped in terms of universal prevention, selective prevention and indicated prevention/intervention strategies. The consensus process clearly identified a number of strategies with strong support by the GDG. Assessment was seen as important across all levels of prevention and intervention. In addition, at the universal level, parent education and family behavioural supports were seen as important. At the selective prevention level, stress management was seen as important, and at the level of selective prevention and indicated prevention/intervention, formal social support was seen as important. |
| Trade-off between net health benefits and resource use | No economic evidence is available. The GDG expressed the view that implementation of strategies aimed at engaging families and carers as a resource in the design, implementation and monitoring of interventions for the person with a learning disability and behaviour that challenges is likely to be cost effective if it enhances improvement of outcomes for the person with a learning disability and behaviour that challenges, which, in turn, is expected to reduce associated costs, which can be substantial (for example, costs incurred by inpatient placements). |
| Quality of evidence | The review was not based on empirical evidence and therefore there was no quality assessment. The formal consensus process involved the use of the modified nominal group technique, which was chosen because of its suitability within the guideline development process. The method is concerned with deriving a group decision from a set of expert individuals and is commonly used for the development of consensus in healthcare. |
| Other considerations | N/A |
- Introduction
- 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?
- 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?
- Recommendations and link to evidence
- Interventions for carers - Challenging Behaviour and Learning DisabilitiesInterventions for carers - Challenging Behaviour and Learning Disabilities
Your browsing activity is empty.
Activity recording is turned off.
See more...