| 1. Bissell et al.,97 2005 | The experience of a man with severe challenging behaviour following resettlement from hospital: a single case design | Peer-reviewed journal article | To investigate the effectiveness of a behavioural intervention in the management of problem behaviours | Single client case study, based on clinical psychology caseload notes | Single client (55-year-old male) with severe learning disabilities. Other conditions: epilepsy | Examples of behaviour provided: shouting, screaming, destruction of environment, smearing faeces, physical aggression towards residents and staff | England | Significant decrease in challenging behaviour after implementation of guidelines. Effective dental treatment produced further reduction in challenging behaviour |
| 2. Forrester-Jones,62 2019 | Confronting a looming crisis. People with learning disabilities or autism and their carers getting older | Report | To explore the experiences of older family carers as they continue to care for their older adult relatives with learning disabilities | Research: qualitative; data collection = interviews with older family carers; data analysis = interpretative phenomenological analysis (IPA) | Carers (aged ≥ 50 years) of adults (n = 16; average age = 45 years; 50% over age of 50; gender not stated, but mixed gender) with mild to severe learning disabilities. Other conditions: Smith–Magenis syndrome; Down syndrome (n = 5); cerebral palsy (n = 2); autism (n = 7). Two participants described as displaying ‘behaviours that challenge others‘ | None provided | England | Family carers’ avoidance of future planning unintentionally thwarts opportunities for older people with learning disabilities to learn about options for transition. Issue of choice by individuals not straightforward in all situations, with possibility of conflict with family carers. Reduced effectiveness of social work support due to frequent staff turnover. Early and proactive professional involvement in supporting a ‘whole family’ approach to transition planning is required. Lack of/delays to needs assessment of people with learning disabilities, and lack of functional assessments or positive behaviour support plans. People’s transition ‘stifled’ because of carers’ aversion to sending adult family members to accommodation they considered unsuitable |
| 3. Hubert and Hollins,65 2010 | A study of post-institutionalised men with severe intellectual disabilities and challenging behaviour | Peer-reviewed journal article | To examine the after-effects of moving from institutional care to small group homes among adults with challenging behaviours | Research: ethnography undertaken longitudinally (6 years) | Men (n = 20; age range 29–46 years) resident in institutional hospital, with profound to severe learning disabilities. Other conditions: majority with autistic spectrum disorder and ‘concomitant’ (p. 190) mental health problems | Examples of behaviour provided: physical aggression, self-injury, taking off clothes, ripping up clothes, spreading urine and faeces, eating unsuitable objects | Not stated | Participants’ lives improved materially after taking up residence in new homes, but they continued to experience social exclusion and denial of individual identity and autonomy. Few fundamental changes in professional and social attitudes towards them |
| 4. Leaning and Adderley,64 2015 | From long-stay hospitals to community care: reconstructing the narratives of people with learning disabilities | Peer-reviewed journal article | To describe the journey taken by a man from institutional care to community living | Single client case study, based on clinical psychology caseload notes | Single client (62-year-old male) with severe and profound learning disabilities. Other conditions: autistic spectrum disorder | Examples of behaviour provided: aggression, self-injury, biting, hitting, shouting | England | Over extended period of time, the man was resettled in community. Involved: clinical psychologist’s intense support and advocacy; wider psychology team support, including development and implementation of PBS plan; training for home care staff team and development of transition and subsequent care plan; and involvement of the man’s family and the man himself, with appropriate support. Process complicated by need to adhere to/pass numerous legal requirements |
| 5. Perry et al.,104 2011 | Resettlement outcomes for people with severe challenging behaviour moving from institutional to community living | Peer-reviewed journal article | To evaluate the quality-of-life consequences of resettlement from a learning disability hospital to new purpose-built accommodation | Research: undertaken longitudinally (12–18 months); data collected on quality of care and lifestyle indictors | Adults (n = 18; 13 male/6 female; age range 36–67 years; mean 47 years) with learning disabilities, ranging from lower to upper scores on the Adaptive Behaviour Scale (Nihira et al., 1993). Other conditions: epilepsy (n = 4); autism (n = 3); mental ill-health (n = 7) | Participants classified using the Aberrant Behaviour Checklist (Aman and Singh, 1986): irritability, lethargy, stereotypy, hyperactivity, inappropriate speech | Wales | Quality-of-care and quality-of-life outcomes were generally equivalent or superior to previous hospital levels. Improvement over time was demonstrated in respect of greater family contact and reduction in staff-reported challenging behaviour |
| 6. Perry et al.,63 2013 | Adults with intellectual disabilities and challenging behaviour: the costs and outcomes of in- and out-of-area placements | Peer-reviewed journal article | To compare the costs and outcomes of in- and out-of-area placements for people with learning disabilities and challenging behaviour | Costs, quality-of-care and quality-of-life outcomes | Adults (n = 76; 48 male/28 female; mean age of men 46 years/mean age of women 35 years) with learning disabilities, ranging from lower to upper scores on the ABS (Nihira et al., 1993).
Other conditions: mental illness (28.9% in-area and 15.8% out-of-area); autistic spectrum disorder (47.4% in-area and 44.7% out-of-area) | None provided | Wales | There was a mixed pattern of quality-of-care and quality-of-outcome advantages between the two types of setting. In-area placements had a greater number of advantages than out-of-area placements. Out-of-area placements had lower total costs, accommodation costs and daytime activity costs |
| 7. Sense,137 2018 | Decisions to make, steps to take. A guide to planning long-term care and support for disabled adults and their families. A Sense Toolkit | Resource – sets out information, guidance, and tools | To provide information for people with learning disabilities and their families to start making plans for the future | Non-research; no information provided | People with learning disabilities; family carers of people with learning disabilities | None provided | Not stated: Sense is a UK-based organisation | Comprehensive, easy-to-read guide, setting out main options available, legal rights possessed, and key decisions that need to be made regarding making plans for the future care for people with learning disabilities |
| 8. Slevin et al.,61 2011 | A rapid review of the literature relating to support for people with intellectual disabilities and their family carers when the person has behaviours that challenge and/or mental health problems; or they are advancing in age | Report | (1) What services and support do people with learning disabilities who display behaviours that challenge and their caregivers require to meet their needs? (2) What services and support do older people with learning disabilities and their caregivers require to meet their needs? | Rapid review, using a framework adapted from the NHS Centre for Reviews and Dissemination (2009) and the Rapid Review Methodology (NHS, Wales 2006) | People with learning disabilities who display behaviours that challenge; carers of people with learning disabilities who display behaviours that challenge. Older people with learning disabilities; carers of older people with learning disabilities. Other conditions: no information provided but ‘behaviours that challenge others’ is ‘inclusive of mental health problems’ (p. 9) |
Working definition of ‘behaviours that challenge others’ provided (p. 9):… severely challenging behaviour refers to culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour that is likely to seriously limit use of, or result in the person being denied access to ordinary community facilities Emerson, 1995, p. 44
| Only studies published in English included | People whose behaviour challenges
Support should be based on the use of resources to maintain the person in their own home, if this is their wish. Identified interventions and services (e.g. PBS, use of community specialist teams, short breaks, teaching and supporting caregivers) were found to be successful in doing so. Appropriate day opportunities are also essential, but have not been adequately researched, as is family support to allow people with learning disabilities and behaviours that challenge and their family to lead fulfilling lives. Medication highly used, but behavioural management should be pursued as appropriate. Interventions most likely to be effective when delivered via a family support and education approach, in partnership with formal carers. Active support appears a promising approach. Specialist community teams are a highly effective service. Specialist assessment and treatment units can provide a useful service, but admission should be for a short period, with aim of return to the community. To this end, a model that provides combined specialist support services is recommended. Evidence suggests limited use of full range of mental health services, suggesting deficits in terms of their accessibility and value for people with learning disabilities and behaviours that challenge |
| | | | | | | | Older people with learning disabilities Most older people with learning disabilities and behaviours that challenge wish to continue to live in their family home, and ageing family carers want to continue caring. However, lack of future planning persists. Ageing people with learning disability may face same range of health-related issues as others earlier in their lives. In addition, there are higher rates of some conditions (e.g. dementia). Medications that can help are seldom offered. Appropriate health screening is needed, but scarce evidence that this happens, or that detected health problems are properly investigated and treated. Positive mental health is promoted by such health-improving behaviours, continuing to remain active and having a meaningful and valued life. Relevant training is required for front-line staff to develop skills to provide appropriate care, both in supported living arrangements and in partnership with family carers. Evidence suggests that facilities geared towards the needs of older people with learning disabilities are at best scarce and at worst non-existent. Nursing or residential placement should not be the ‘go-to’ option; a range of intermediate care facilities should be used as appropriate to promote opportunity to return to their home. It should not be assumed that because a person is a particular age that they may not be able to return to their normal home or residence |
| 9. The Housing and Support Partnership,138 2011 | Planning and commissioning housing for people with learning disabilities. A toolkit for local authorities | Report | Resource (‘toolkit’) | Non-research; no information provided | LAs responsible for the planning/commissioning of housing for people with learning disabilities | None provided | All references made in respect of England, and all examples drawn from England | Toolkit – to assist LAs/their partners to plan for the housing requirements of local people with learning disability. Set out in two parts. Planning – the steps likely to be required to plan for a wider choice of housing options. Delivery – the steps and actions likely to be required to commission a choice of housing options. Each section contains a checklist series of questions and suggestions for possible approaches to make progress. Toolkit designed so that each section can be used independently or sequentially |
