Learning disabilities: a survey of community nurses for people with prevalence of challenging behaviour and contact demands

Background. There is scant knowledge on the contacts community nurses for people with learning disabilities have with clients who display challenging behaviours, or the numbers of such people on these nurses‘ caseloads. This study was undertaken in a UK region with a population of 1.68 million people. In this region it is estimated that there are 8500 people with learning disabilities who are in contact with services, this includes around 500 people remaining in hospitals awaiting resettlement. Aims and objectives. The research aims were to identify the overall caseload sizes of the nurses, the prevalence of people with learning disabilities who have challenging behaviours on the nurses’ caseloads and what contact demands these people required. An additional aim was to discover courses or training that helped the nurses to fulfill their roles. Design and methods. A postal survey was undertaken of the total population of community nurses for people with learning disabilities in the region. The method of data collection was a self‐completion questionnaire. Results. The study found that people with challenging behaviours accounted for over a quarter of the combined caseloads, and these clients required the most frequent visits from the nurses. There was a wide range in the number of clients on the caseloads of each nurse but overall these were higher than in other parts of the UK. Conclusions. It is concluded that community nurses for people with learning disabilities have large caseloads and people with learning disabilities who have challenging behaviours, who account for over one‐quarter of the clients they visit, require much more frequent contact visits than other clients. The combination of high numbers of clients (or low numbers of these nurses) may impact on how such nurses are able to perform their role and functions. Relevance to clinical practice. An increase in the numbers of community nurses for people with learning disabilities and skill development in caring for people with challenging behaviours is recommended. If this is not performed the clinical effectiveness of this group of nurses with respect to their work with people who challenge services may be unduly hampered.     

The role of community nurses for people with learning disabilities: working with people who challenge

The locus of care for people with learning disabilities has transferred from institutional to community-based services. Increasingly people who have learning disabilities and additional challenging behaviours live in community settings. Spearheading the care for these people are community nurses for people with learning disabilities. This study aimed to explicate the role of these nurses in their day-to-day work with people who challenge. Using grounded theory methodology, 22 nurses were selected by theoretical sampling and interviewed. An analytical story and theoretical framework that emerged from the grounded data is presented. It is suggested that this framework has utility for practice.     

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.     

Service User Outcomes of Staff Training in Positive Behaviour Support Using Person‐Focused Training: A Control Group Study

Background Effectively supporting individuals with intellectual disabilities who display challenging behaviours continues to be a priority for service providers. Person‐focused training (PFT) is a model of service delivery which provides staff with skills in functional assessment and intervention development. Existing longitudinal data from a study of 138 cases suggest that implementation of staff‐developed behaviour support plans through PFT is effective in reducing challenging behaviour in approximately 77% of cases [McClean et al.Journal of Intellectual Disability Research (2005) vol. 49, pp. 340–353]. However, no control group was used in this study. Method The current study involves the use of a control group of individuals with challenging behaviours matched against those selected for PFT over a 6‐month period. Groups were matched on type of challenging behaviour, duration of challenging behaviour, gender and level of disability. Information on the frequency, management difficulty and severity of challenging behaviour was collected pre‐ and post‐training using the Checklist of Challenging Behaviours (CCB) for both groups. Observational data were collected for the target group alone. Rates of psychotropic medication were tracked across the training period. Results Significant reductions in the frequency, management difficulty and severity of challenging behaviour were found for service users in the target group but not in the control group after 6 months. No significant changes were found in the use of psychotropic medication for either group over the 6‐month period. Conclusion Overall results suggest that PFT is an effective model for providing support to individuals with challenging behaviours.     

Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

Evaluating clinical supervision in community homes and teams serving adults with learning disabilities

Evaluating clinical supervision in community homes and teams serving adults with learning disabilities This paper provides a discussion of some of the professional and policy outcomes associated with implementing clinical supervision within a community service for adults with learning disabilities. It is based upon a small qualitative study whose aim was to examine how clinical supervision was operating, its strengths, its weaknesses and where improvements might be made. The study followed the introduction of clinical supervision 9 months earlier for nurses and carers employed in three community homes and one community multiprofessional team. The method consisted of direct observation of individual and group supervision and staff completing critical incident questionnaires, followed by semi-structured, audio-taped interviews with seven registered nurses and four community team members, including a social worker, psychologist and physiotherapist. Outcomes were expressed in two ways: in terms of the benefits of clinical supervision or of its ambivalence. The range of matters brought for discussion, or resolution, in supervision reflected some of the difficulties or dilemmas staff faced working in this area, for example promoting empowerment and assisting clients to make choices, and dealing with clients' challenging and inappropriate behaviours. As for the role of supervisor there was some evidence of nurses expressing apprehension or unpreparedness, also a perceived general concern over the relatively low status of clinical supervision, thought to be due to absence of visible management approval or failure to articulate properly the objective of supervision. A limitation of the study was its small subject sample although considerable data were gathered in each of the units through relatively long-term contact.     

Sexuality and learning disabilities

BACKGROUND: Sexuality and sexual health are issues that have been neglected in nursing practice and in the literature. This literature review discusses how the sexuality and sexual health of clients with learning disabilities are perceived and addressed in contemporary society. CONCLUSION: Sexuality and challenging behaviours, such as self-harm, can be linked and by denying or ignoring the sexual needs of clients there might be a case for professional negligence. The attitudes of staff and carers are important in understanding the sexual needs of clients and the shortfall in the education and training of nurses.     

High Cost Residential Placements for Adults with Intellectual Disabilities

Background Concern has been expressed repeatedly about the cost and quality of residential placements for adults with learning disabilities and additional needs. This study sought to identify characteristics of the highest cost placements in the South‐East of England. Method Lead learning disability commissioners in the South‐East of England were asked to provide information about the five highest cost residential placements that they commissioned for adults with learning disabilities. Results The average placement cost of £172k per annum disguised wide variation. Individuals placed were mainly young and male with high rates of challenging behaviour and/or autism spectrum disorder. Most placements were in out‐of‐area residential care. The highest costs were associated with hospital placements and placements for people presenting challenging behaviour. Conclusions Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out‐of‐area residential care. There remains limited evidence of plans to redirect resources to more local service developments.     

Caring for people with learning disability using care management

Current Government health policy is moving towards the delivery of services for clients with a learning disability through mainstream primary care services. At present there are difficulties in providing health services that meet the needs of clients. These include lack of resources (financial, physical and human), time and expertise. Yet clients with learning disabilities often have some of the most complex physical and mental health needs and they have a right to expect access to services that are responsive and sensitive to their requirements. In light of the current policy and stated difficulties, all service providers and stakeholders need to work together to review how services are provided and to negotiate shared resources. This article suggests adopting a care management approach, where clients are supported by different providers with a lead practitioner taking responsibility for assessment, planning and review in partnership with the client and his/her carers.     

Implementation and Evaluation of Active Support

Objectives Active support was implemented in three community houses (active support houses), with 11 service users with severe learning disabilities. Methods This was evaluated with reference to changes in levels of engagement, challenging behaviour (major and minor) and staff contact, measured against three comparison services (non‐active support houses). Results All measures increased for the active support houses. Significant increases in activity levels were found in one house. Statistically significant increases in activity and minor challenging behaviour were also found when all active support houses were compared with all non‐active support houses. In the non‐active support houses, all measures decreased, with the exception of mean level of staff contact in one house. Conclusions Unlike previous research findings, those service users who were less able did not receive comparatively more support from staff post‐training and changes appeared unrelated to staff contact.     

RESIDENT BEHAVIOUR AND STAFF INTERACTION WITH PEOPLE WITH INTELLECTUAL DISABILITIES AND SERIOUSLY CHALLENGING BEHAVIOUR IN RESIDENTIAL SERVICES

The behaviour of 16 residents with severe intellectual disabilities and severely challenging behaviour and the interactions they received from staff were observed. Eight people lived in traditional hospitals and eight in community settings. The two groups were individually matched by adaptive ability. Differences in the occurrence of various categories of staff/resident interaction and resident activity between die two groups were not statistically significant. There was some indication that interaction and engagement in activity were improved in those community settings which were genuinely small and based on ordinary housing. However, a more striking finding for all residents was their lack of constructive occupation and the low level of assistance given by staff to help individuals participate more. Although generally responsive to the social overtures of residents, staff were otherwise not found to have an evident focus on encouraging resident engagement in activity. Two case studies are presented which, with other recent research, point to the impact which the content and focus of staff attention can have on resident activity patterns. Comparison to research on people with less severe challenging behaviour supports the contention that individuals with the most severe challenging behaviours tend to lead more impoverished lives.     

Assessing the Need for Challenging Behaviour Services in an English Health District

The aim of the present study was to assess the health care needs for people with learning difficulties who display challenging behaviour in a newly established health district. Ninety-eight clients were studied, using Disability Assessment Schedule (DAS), Aberrant Behaviour Checklist (ABC) and The Psychopathology Inventory for Mentally Retarded Adults (PIMRA). The results showed that a large proportion of them were mobile, continent and able to feed themselves. Almost half had no problems in communication but less than half were sociable. On the whole, they did not have adequate skills. A large proportion of them did not present severe challenging behaviour and did not suffer from psychiatric illnesses, apart from inappropriate adjustment disorder. Correlation coefficients showed that there were relationships between challenging behaviours and some of clients' disabilities and inappropriate adjustment disorder.     

Identity Conflict in People with Intellectual Disabilities: What Role do Service‐providers Play in Mediating Stigma?

Background This study explores the relationship that the people with an intellectual disability have with their ‘learning disabled’ identity and the influence of intellectual disability services on this relationship. Methods Information was collected using three methodologies: (1) audit of referrals to a community psychology service for people with intellectual disabilities; (2) service‐users focus group; (3) survey of the attitudes of intellectual disability service‐providers. Results The results indicate that the conflict about an intellectually disabled identity may be an area of unmet need in services for people with intellectual disabilities. Conclusions There is a need for careful consideration of the ways in which this identity is managed by service‐providers.     

Behaviour modification and gentle teaching workshops: management of children with learning disabilities* exhibiting challenging behaviour and implications for learning disability nursing

BACKGROUND: Challenging behaviours (behaviour difficulties) represent a problem of considerable clinical significance for learning disability nurses, and a source of much human distress. Gentle teaching is a relatively new approach to dealing with behavioural difficulties, and has been received with enthusiasm by clinicians, but has so far received little empirical support. The current study attempted to compare gentle teaching with a well-established alternative (behaviour modification) and a control group. OBJECTIVES: To examine the comparative effectiveness of gentle teaching, behaviour modification and control interventions for challenging behaviour amongst children with learning disabilities. DESIGN: Nonrandomized controlled trial. SETTING: Service users' homes in East Yorkshire. PARTICIPANTS: Seventy-seven children who presented with learning disabilities and challenging behaviour (behaviour difficulties) and their parents. PROCEDURE: One-day workshops in were offered by recognized authorities in either behaviour modification or gentle teaching that were not otherwise involved with the research project. Forty-one participants were recruited to the gentle teaching condition; 36 to behaviour modification; 26 to the control group. Random allocation was not possible, because of the slow uptake by interested parents. Measures was preintervention, and at assessment points up until 12 months following intervention. ANALYSIS: Quantitative analysis of pre-post differences between the groups, using t-test. RESULTS: In general, no significant differences were found between the treatment groups and controls. Significant improvements were found for both gentle teachingand behaviour modification children over controls on the AAMR ABS XVII (social engagement) subscale. Controls had more contact with medical practitioner (GP) services than behaviour modification children and less than gentle teaching children. CONCLUSION: Although very few differences were found between the three groups, those that did exist generally favoured behaviour modification. Implications for service provision and learning disability nursing practice are described.     

Assistive technology: providing independence for individuals with disabilities.

Despite improvements in technology and health care, the number of people with disabilities, and the complexity of needs that they and their families experience, continue to increase. In response to these needs, specialized technology has been developed that helps people with disabilities to become more independent and more involved in the activities in their homes, schools, and communities. However, many individuals with disabilities, their family members, and many rehabilitation service providers are not aware of the availability, use of, and benefits afforded by assistive technology devices. Further, many providers have not received the pre-service academic preparation required to provide services and support to their clients. Preparation includes acquiring the knowledge and skills needed for evaluation of client needs, making appropriate assistive technology recommendations, and developing advocacy skills such as writing letters of necessity that justify funding for assistive technology devices. This article provides information about these issues and suggests that further information is available through continuing education courses as well as articles in the reference list and other sources cited in the accompanying tables.     

Systematic Review of Vocational Preferences on Behavioral Outcomes of Individuals with Disabilities

Assessing performance of individuals with disabilities in relation to their preferences is a method of determining the social validity of practices. The benefits of using vocational preferences on related behavioral outcomes of individuals with disabilities such as task completion, challenging behavior, and indices of happiness, have been explored through several studies. The purpose of this systematic review was to assess the effects of preference for certain vocational activities on performance outcomes for individuals with disabilities. A comprehensive search resulted in a total of 16 included studies. Studies were analyzed according to (a) participant characteristics (e.g., diagnosis, age), (b) setting, (c) work tasks, (d) service provider, (e) experimental design or observational method, (f) preference assessment method, (g) independent variable, and (h) outcomes. Studies were appraised with quality indicators for single-case research. While outcomes were primarily positive in support of incorporating preferred vocational conditions, quality indicators were generally lacking and there are numerous areas calling for future research.     

Complementary roles of nurse and health-care assistant

Summary

• ? In community hospitals, and units for people with learning disabilities, the theoretical framework of Oxfordshire nursing services was used to examine the complementary roles of nurse and support worker.
• ? This framework proposes that the mix in nursing teams should be determined by the needs of patients/clients.
• ? The sample consisted of directors of nursing services, senior nurses/managers, nurses, support workers and patients/clients. Data were collected by utilizing a multimethod approach.
• ? Findings showed that in the deployment of grade-mix the needs of clients/patients were overlooked.
• ? In the community hospitals the primary nurses were the main caregivers regardless of whether the patients needed the qualified input. Conversely, in the units for people with learning disabilities, the main involvement of direct-care staff disregarded the fact that needs of many clients could only be met with a nurse's input.
• ? In their present supervisory role the primary nurses were posed with the problem of losing client contact.

     

A CHECKLIST OF CHALLENGING BEHAVIOUR: THE DEVELOPMENT OF A SURVEY INSTRUMENT

The Checklist of Challenging Behaviour (CCB) was developed as a survey instrument in a study of aggressive behaviour amongst people with learning difficulties from a single health district within the UK. The content of the CCB was generated by service providers from a review of the literature and through an analysis of hospital records of violent incidents. The resultant behaviours were separated into two checklists; the first was a list of aggressive behaviours involving harmful, physical contact with others and, the second, a list of other types of challenging behaviour. Five-point scales were used to rate the behaviour for frequency, management difficulty and severity. The CCB appeared to have an acceptable level of content validity. Reliability checks supported the use of the CCB as a survey instrument for identifying the range and type of aggressive and challenging behaviours. The data did not support the use of the CCB as a reliable measure for change at the individual level. The difficulties of measuring changes in aggressive behaviour are discussed.     

A Participatory Process Involving People with Development Disabilities in Community Development

The community integration movement emphasized in the developmental disabilities field is consistent with recent theorizing in community development that promotes participation and involvement. Advocates, persons served, families, service providers and managers in the developmental disabilities service system are increasingly interested in participatory methods that promote input into the development, implementation, and refinement of services. The current paper describes a four-step process by which people with developmental disabilities, their families, and local service providers contributed to the development of an area-wide strategic plan for the local developmental disabilities service system. Each step of the process is described in detail. Insights from the process and its relation to community development are provided.