Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England

Background

Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs.

Method

Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent).

Results

Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models.

Conclusions

ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.     

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.     

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.     

Factors Relating to Staff Attributions of Control Over Challenging Behaviour

Background Previous research has suggested that severity of intellectual disability (ID) and topography of behaviour may influence staff causal attributions regarding challenging behaviour. Subsequently, these causal attributions may influence helping behaviours. This study investigated the relationship between attributions of control over challenging behaviour and individual and organizational factors. Methods A cross‐sectional survey using a between‐subjects natural groups design was employed. Care staff and managers completed measures to examine the relationship between staff attributions of control over challenging behaviour and client‐related variables, staff‐related variables and functioning of the organization. Results Staff attributed challenging behaviour as being less under personal control if the organization was of better quality. Staff attributions of control over challenging behaviours were lower if staff displayed positive attitudes towards the client, the physical and social environment was appropriate and the overall approach to delivering care seemed well‐structured. There was no relationship between staff attributions of control and ability of the individual or the overall level of challenging behaviour. However, with respect to specific topographies (i.e. physically aggressive and self‐injurious behaviour) there were different profiles of causal attributions made. Discussion Organizational factors, staff behaviour and the topography of challenging behaviour can each influence the attributions of control that staff make. Any interventions that seek to increase the helping behaviour of staff through manipulation of the attributions that they make need to consider both individual factors (topography of behaviour) and environmental factors (staff behaviour and the quality of the service and organization).     

Training staff to promote self‐management in people with intellectual disabilities

Background

People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self‐management in people with intellectual disabilities.

Method

Effectiveness was assessed with questionnaires addressing clients’ (n = 26) independence and self‐reliance, support needs and challenging behaviour, using a pre–posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training.

Results

In the long term, the intervention group showed a significant increase in independence and self‐reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards.

Conclusions

Further self‐management research is required to investigate how independence and self‐reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation.     

Developing a therapeutic relationship with a blind client with a severe intellectual disability and persistent challenging behaviour

Purpose. A blind, severely intellectually impaired boy aged 17 with Down syndrome and persistent serious challenging behavior received attachment-based behavior modification treatment. The aim was to study the effect of the treatment and the development of the therapeutic attachment relationship.

Method. In a single-case study, attachment therapy sessions alternated with control sessions. Treatment started with attachment therapy (phase 1), followed by behavior modification (phase 2). The instruments used were: Residential observation lists for challenging behavior, video analyses of attachment behavior in therapy sessions and physiological indicators of affect regulation measuring the pre-ejection period (PEP) and respiratory sinus arrhythmia (RSA) as indices of cardiac sympatho-vagal activity.

Results. The client exhibited less frequent and less intensely challenging behavior. The data indicated more appropriate replacement behavior and less PEP arousal during the behavior modification treatment given by the attachment therapist compared to the control therapist who used the same protocol. The client showed more active and longer-lasting attachment behavior, especially proximity seeking, towards the attachment therapist than towards the control therapist.

Conclusions. Attachment-based psychotherapy proved successful in eliciting attachment behavior in a severely intellectually disabled, socially deprived, behaviorally and affectively dysregulated adolescent. The resulting relationship proved to be a therapeutic platform conducive to behavior change.