Use of specialist occupational therapists within residential learning disabilities: a justified case?

The principles of ‘social role valorization’ ( Wolfensberger 1983 ) advocate access to general primary health and social care facilities for individuals with learning disabilities alongside the rest of the population. Throughout the UK, there has been a variety of responses to employing specialist staff for people with a learning disability. Specialist learning disability occupational therapists with specific experience and skills in learning disabilities are employed by some National Health Service (NHS) trusts, whereas generalist occupational therapists with skills in assessing and providing intervention for issues concerning physical disability are employed by other trusts and social services departments. This article presents the findings of a small‐scale study of the use of specialist occupational therapists in residential homes within one NHS trust. It presents the views of community staff regarding their clients' needs in relation to specialist and generalist occupational therapy input. Recommendations are provided for the possible use of specialist and generalist occupational therapists for the clients and staff within community learning disability residential health and social care homes.     

Burnout in direct care staff in intellectual disability services: a factor analytic study of the Maslach Burnout Inventory

Background There is gathering research interest in the well‐being of staff working in services for people with intellectual disability (ID), including the assessment of burnout and its correlates. However, no previous studies have considered the applicability of the main three dimensions of burnout to staff in ID services. Methods Data were analysed from two samples of staff (total n = 184) who participated in research studies that included completion of the Maslach Burnout Inventory (MBI). Results Nineteen of the MBI items loaded clearly onto factors closely resembling the three original subscales: emotional exhaustion, depersonalization and personal accomplishment. Internal consistency for the three MBI subscales was fair to good (range 0.68–0.87). Conclusions The original three MBI dimensions were found to be highly relevant to the present sample of staff. The analyses support the construct validity and reliability of the MBI for staff in ID services.     

Factors associated with intended staff turnover and job search behaviour in services for people with intellectual disability

Staff turnover is a major problem in services for people with intellectual disability (ID). Therefore, understanding the reasons for staff turnover is vital for organizations seeking to improve their performance. The present study investigates the factors directly and indirectly associated with an intention to leave an organization and actual job search behaviour amongst staff in services for people with ID. As part of a large‐scale survey of staff in services for people with ID, information was collected from 450 staff concerning intended turnover, job search behaviour and a wide range of factors potentially associated with these outcomes. Path analyses revealed that work satisfaction, job strain, younger staff age and easier subjective labour conditions were directly associated with intended turnover. The same factors, with the exception of younger staff age, were also directly associated with job search behaviour. Factors indirectly associated with these outcomes included wishful thinking, alienative commitment to the organization, lack of staff support, role ambiguity, working longer contracted hours, having a low‐status job, a lack of influence over decisions at work and less orientation to working in community settings with people with ID. The models of staff turnover empirically derived in the present study confirm and extend previous research in this area. The implications for organizations are discussed.     

Alcohol problems and intellectual disability

The present paper discusses some of the difficulties in working with people with an intellectual disability and an alcohol problem, and draws on the sparse literature about alcohol problems in people with intellectual disability. Four individuals drawn from the current clinical case loads of medical practitioners in UK community intellectual disability services are described. Some suggestions for staff training, patient education and health promotion, and therapeutic approaches are made.     

Factors associated with staff stress and work satisfaction in services for people with intellectual disability

Staff stress and morale have been identified as major issues affecting the quality of services for people with intellectual disability. The present study investigates factors directly and indirectly associated with staff general distress, job strain and work satisfaction amongst staff in services for people with intellectual disability. As part of a large-scale survey of staff in services for people with intellectual disability, information was collected from 450 staff concerning general distress, job strain and work satisfaction, and a wide range of factors potentially associated with these outcomes. Path analyses revealed that three factors accounted for 28% of the variance in general distress scores: (1) wishful thinking, (2) stress linked to work–home conflict and (3) role ambiguity. Six factors accounted for 50% of the variance in job strain scores: (1) wishful thinking, (2) stress linked to a lack of staff support, (3) alienative commitment, (4) role ambiguity, (5) stressors linked to a low status job and (6) working longer contracted hours. Six factors accounted for 66% of the variance in work satisfaction scores: (1) stress linked to a low status job, (2) support from supervisors, (3) influence over work decisions, (4) alienative commitment, (5) support from colleagues and (6) older staff age. A range of factors indirectly associated with the three outcome measures was also identified. The models of general distress, job strain and work satisfaction empirically derived in the present study confirm and extend previous research in this area. The implications for organizations and future research are discussed.     

The relationship between psychiatric and physical health in elderly people with intellectual disability

Elderly people with intellectual disability have high rates of both psychiatric and physical disorders. In the elderly general population, these disorders are known to be associated. Whether such an association exists amongst elderly people with intellectual disability is unclear, but the resolution of this question is of clinical as well as academic importance. Psychiatric and physical assessments were completed on 134 people with intellectual disability aged 65 years and over (93.7% of the ascertained population living in Leicestershire, UK). The relationship between the two disorders was statistically examined. The number of physical disorders, age, level of intellectual disability and smoking status were retained in the logistic regression equation which predicted caseness for dementia in 79.9%. Similar statistical modelling for psychiatric disorders (other than dementia) retained the level of intellectual disability as the only explanatory variable in the equation. These results differ from the elderly general population, but are in keeping with the one previous intellectual disability study. In view of the poor use of general medical services by elderly people with intellectual disability, knowledge of such comorbidity should alert psychiatrists to the need for physical assessments in order to optimize health.     

Predictors of admission to a high-security hospital of people with intellectual disability with and without schizophrenia

Admission to secure hospital facilities is a rare outcome for people with intellectual disability with or without concomitant psychosis. The present study compares people with mild intellectual disability with and without schizophrenia resident in the Scottish and Northern Irish State Hospital, Carstairs, to matched mild intellectual disability controls, also with and without schizophrenia, in the community. It is hoped that this study may identify socio‐demographic, clinical or historical predictors which may lead to admission to secure hospital facilities for people with mild intellectual disability. One hundred and eight subjects were identified from two previous studies which concerned State Hospital patients and patients with intellectual disability with and without schizophrenia. Four experimental groups were derived: (1) 14 individuals with comorbid intellectual disability and schizophrenia who had been resident in the State Hospital; (2) 34 comorbid community control subjects; (3) 33 individuals with intellectual disability and no psychosis who had been resident in the State Hospital; and (4) 27 community control subjects with mild intellectual disability. The four groups were compared on a range of socio‐demographic, historical and clinical variables obtained from case records and subject interviews. Relative to community controls, people with intellectual disability and no psychosis in the State Hospital are likely to be single, to have a later age of first psychiatric hospital admission, and to have a history of previous suicide attempts, alcohol abuse or drug misuse. Subjects with comorbid intellectual disability and schizophrenia in the State Hospital are more likely to be male, to have an early age of first psychiatric admission, and to have no family history of either schizophrenia or intellectual disability. Strategies aimed at addressing suicidal behaviour, alcohol and drug misuse amongst people with intellectual disability may facilitate a reduction in the number of admissions to high‐security hospitals in the UK. In people with comorbid intellectual disability and schizophrenia, males with an early age of onset and no known family history are more likely to require care and treatment in a secure psychiatric setting. Such comorbid subjects may be suffering from a particular malignant form of schizophrenia, manifesting in childhood as cognitive impairment prior to the early onset of psychosis in teenage years.     

Rates of breastfeeding and exposure to socio-economic adversity amongst children with intellectual disability

Children with intellectual disability are at increased risk of experiencing poor health relative to their typically developing peers. Previous research indicates that exposure to socio-economic disadvantage contributes towards this disparity but that additional factors (including parenting practices) may be involved in mediating/moderating pathways. This study examined duration of breastfeeding amongst children with and without intellectual disability by a secondary analysis of data from the UK Millennium Cohort Study. Children with intellectual disability were significantly less likely to have been ever breastfed; breastfed exclusively or at all at 3 months or breastfed at all at 6 months relative to children without intellectual disability. None of these differences remained significant when other psycho-social risk factors for reduced breastfeeding were controlled for. The study adds to both the sparse literature on breastfeeding practices amongst families of children with intellectual disability and research demonstrating relationships between socio-economic disadvantage and wellbeing for children with intellectual disability.     

Investigating the relationship between stress and worker behaviour

Direct care staff working in six residential group homes for people with intellectual disability were asked to complete a questionnaire which asked for information on levels of stress (anxiety and depression), the types of demand experienced by the staff, the support they received and the constraints they faced at work. Staff were also observed at work using a schedule which detailed who they interacted with, the content and type of interaction, and what activities staff were involved in. Measurement of workers' anxiety and depression levels confirmed management assessments of staff stress levels in the homes: two residential group homes were classified as 'low stress' and four as 'high stress'. A number of differences emerged between the two groups. Staff in the high stress homes reported greater demands and less support than those in the low stress homes. Higher levels of interaction were found between staff and residents in low stress houses, where more of the interaction was given as assistance and positive interactions. However, activities in higher-stress group homes appeared to be more community oriented, with staff spending a much greater amount of time out of the house. The importance of these results for both staff and residents is discussed, and suggestions for further work are made.     

A comparative study of stress and burnout among staff caregivers in nursing homes and acute geriatric wards

OBJECTIVE: To compare levels of stress and burnout among staff caregivers in nursing homes and acute geriatric wards of general hospitals. METHODS: A cross-sectional survey was conducted in three nursing homes (total of 522 beds, 270 caregivers) and nine geriatric sections of general hospitals (total of 371 beds, 280 caregivers). Staff caregivers were asked to answer a four-part questionnaire made up of socio-demographic data, the General Health Questionnaire (GHQ-12), the Maslach Burnout Inventory (MBI) and the Stressful Events Questionnaire (SEQ). RESULTS: 355 carers (172 from nursing homes, 183 from acute geriatric wards) answered the questionnaire (response rate 66%). Bivariate analysis reveals that general hospital carers show higher GHQ scores, higher MBI-Depersonalisation (DP) and Emotional Exhaustion (EE) sub-scores and lower MBI-Personal Accomplishment sub-scores. Stressful Events (as revealed by the SEQ) are more frequently reported by general hospital carers, particularly events related to patients' behavioural disorders. Multivariate analysis shows that general hospital work-setting, professional role, female gender and patient/carer ratio are significant explanatory variables of a high MBI-EE sub-score, while general work setting and disability are the best explanatory variables of a high MBI-DP sub-score. Professional role and general hospital work-setting are independent factors in a low MBI-Personal Accomplishment (PA) sub-score. CONCLUSION: These results appear to show that levels of stress and burnout among staff caregivers are moderate in acute geriatric wards, but significantly higher than in nursing homes. This suggests that increasing the rate of trained staff and improving staff support-for instance by the implementation of Consultation-Liaison (C-L) Psychiatry and/or continuing education programmes-could be needed mostly in acute geriatric wards.     

Educating staff working in long-term care about delirium: the Trojan horse for improving quality of care?

OBJECTIVE: This study aimed to design a multicomponent intervention to improve delirium care in long-term care facilities for older people in the UK and to identify the levers and barriers to its implementation in practice. METHODS: The research incorporated the theoretical phase and Phase 1 of the Medical Research Council's framework. We designed a multicomponent intervention based on the evidence for effective interventions for delirium and for changing practice. We refined the intervention with input from care home staff and field visits to homes. Our intervention incorporated the following features: targeting risk factors for delirium, a 'delirium practitioner' functioning as a facilitator, an education package for care home staff, staff working groups at each home to identify barriers to improving delirium care and to produce tailored solutions, a local champion identified from the working groups, consultation, liaison with other professionals, and audit or feedback. The delirium practitioner recorded her experiences of delivering the intervention in a contemporaneous log. This was analysed using framework analysis to determine the levers and barriers to implementation. RESULTS: We introduced a multicomponent intervention for delirium in six care homes in Leeds. Levers to implementation included flexibility, tailoring training to staff needs, engendering pride and ownership amongst staff, and minimising extra work. Barriers included time constraints, poor organization, and communication problems. CONCLUSION: We were able to design and deliver an evidence-based multicomponent intervention for delirium that was acceptable to staff. The next steps are to establish its feasibility and effectiveness in modifying outcomes for residents of care homes.     

Gendered service delivery: a masculine and feminine perspective on staff gender

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.     

What Can the Experiences of People With an Intellectual Disability Tell Us About the Desirable Attributes of a Mental Health Professional?

Introduction: Mental health professionals have reported that they have limited knowledge, skills, and confidence in the area of intellectual disability mental health. This article aims to learn from the experiences of people with intellectual disability about the attributes that may assist mainstream mental health professionals to provide them with a quality mental health service. Methods: Six people with intellectual disability participated in an interview or focus group. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. Results: The findings supported previous research for the need for mental health professionals to be adaptable, able to communicate, and work with a person’s support network. The study reinforced the need for professionals to undertake professional development in the area but also suggested that people with intellectual disability be included as educators and as peer workers. New attributes were identified, including the need for mental health professionals to be able to build rapport and trust through demonstrating their experience and respect for working with people with intellectual disability, and their ability to understand trauma and how it may influence mental health needs. Conclusions: The attributes identified in the study could be used to inform an intellectual disability mental health workforce development framework.     

Needs for oral care among people with intellectual disability not in contact with Community Dental Services

Previous research has found an unmet need for oral care among people with intellectual disability. The key factors which have been indicated are low expectations, fear of treatment, lack of awareness among carers and problems in accessing dental services. The withdrawal of many general dental practitioners (GDPs) from the National Health Service (NHS) may have exacerbated the latter problem in the UK. The aims of the present study were: (1) to assess the extent of unmet clinical needs in a group of adults with intellectual disability living in the community who were not in contact with the Community Dental Service (CDS); and (2) to explore their perceptions of teeth and contact with dentists to identify how oral care can be improved. Interviews were completed with subjects and/or carers and a dental examination was completed. There were higher levels of untreated caries (decay), and gingival or periodontal (gum) problems among the sample than in either the general population, or in a previous survey of CDS users at day centres and residential facilities. The subjects were largely unaware of dental problems, and used the appearance and absence of pain to judge the condition of their teeth. They depended greatly on their carers for decision‐making and support with regard to visiting the dentist and tooth‐brushing. Carers requested training in oral care and the use of dental services, and support in dealing with clients who have problems tolerating tooth‐brushing. The subjects had experienced a wide variation in the treatment provided by dentists, but had not found it difficult to access a dentist despite recent reductions in the availability of NHS dental care. They expressed a particular need for a good relationship with their dentist and for their dentist to have personal skills in relating to people with an intellectual disability. Dental screening checks and oral care training for carers should be made easily available. Care plans should include tooth‐brushing and dietary issues for all clients who have their own natural teeth. There are significant training issues for dentists in developing personal skills in total communication, disability awareness and attitudes which value people with intellectual disability.     

Epilepsy, intellectual disability, and living environment: a critical review

Epilepsy occurs at a higher incidence and is more prevalent in people with an intellectual disability than in the general population. Nonetheless, we have insufficient knowledge of the extra needs of people with epilepsy and intellectual disability, of their families, and of the living environment. The lack of information about specific needs of the living environment may, in particular, be important. A Medline search revealed that scant attention has been paid to the specific needs for patients with epilepsy and intellectual disability, and only a few studies have focused specifically on this topic. The majority of studies have been focused on medical treatment issues and the organization and availability of health and social services. There is an indication that people with epilepsy and intellectual disability lack skills training appropriate to their intellectual potential. And although several reviews have emphasized the need for information on living environment and quality of life, we did not find such studies in our search.     

Perceived mental health needs and adequacy of service provision to older people in care homes in the UK: a national survey

OBJECTIVE: To assess perceived need and adequacy of service provision by old age psychiatrists (OAPs) to older people living in care homes in the UK. METHODS: A postal survey of managers of a stratified random sample of 2638 (14% of 18,698) care homes in the UK caring for older residents. Reminders were sent to those not returning the questionnaires. RESULTS: The response rate was 64% (n = 1689). Forty-one percent of care home managers felt that at least 50% of their residents needed psychiatric evaluation. Cognitive impairment, depressive symptoms and challenging behaviour was thought to be present in at least a quarter of residents by 78%, 29% and 17% respectively. Thirty-eight percent of managers reported that their homes 'never' received any visits from OAPs and only a half described the current frequency of visits as adequate. Pharmacological advice was perceived to be adequate by about three-quarters but less than a half perceived non-pharmacological advice as adequate. Eighty percent wanted more input for staff education and training. Perceived need ( p < 0.001), frequency of visits by OAPs ( p = 0.001), availability of geriatrician ( p = 0.001), amount of non-pharmacological advice ( p = 0.014) and direct referral access to OAPs for known patients ( p = 0.036) were found to be independent predictors of perceived inadequacy of service provision by OAPs. CONCLUSION: The survey highlights the perception of unmet need and inadequacy of service provision by OAPs amongst managers of care homes in the UK. The study findings, if confirmed by direct observational studies, may have a considerable impact on already sparse resources with a need to explore efficacy of different models of care in meeting this need.     

'It's pretty hard with our ones, they can't talk, the more able bodied can participate': staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities

Background   The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored.
Method and findings   The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis.
Conclusions   The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.     

The characteristics and residential situations of people with severe intellectual disability and the most severe challenging behaviour in Wales

A total population study of people in Wales with severe intellectual disability and the most severe challenging behaviour was undertaken to identify their characteristics, and the nature of their residential arrangements and service support. Forty-one participants were identified: five living in family homes, 17 in community housing, 17 in hospitals and two in hostels. The family home group had slightly higher adaptive behaviour scores than residents in community housing. Both groups had significantly higher scores than the hospital and hostel residents combined. Assessments of challenging behaviour showed the groups to be similar and to have a considerable range and extent of severely problematic behaviour. Co-occurrence of several forms of frequent severe problem behaviour was the norm and there was a marked association with social impairment. The five people living in their family homes had nominated service keyworkers, but reported professional input was low. The residential situations comprised two main service types: (1) traditional services, which were characterized by large living unit and facility size, atypical architectural design, relative isolation from the community, a greater level of buildings adaptations, low staff:resident ratios, a relatively high percentage of qualified staff, and a relative absence of systematic approaches to goal planning and structured activity; and (2) new community houses, which were characterized by small size, domestic design, location within the community, a lower level of buildings adaptations, much higher staff:resident ratios, and less emphasis on qualified staff but a greater emphasis on systematic working methods. Community settings were similar in having ‘specialist’ resident groupings based on challenging behaviour or conditions like autism in which challenging behaviours are common. A policy to provide for people with these characteristics being resettled from traditional settings in this way seems to have been established.     

Dementia in people with learning disability: a preliminary study into care staff knowledge and attributions

The present paper describes the findings of a pilot study funded by the NHS Executive Primary and Community Care Research Initiative Small Projects Scheme that investigated the knowledge and attributions of dementia held by care staff who work with older adults with learning disability. Meetings took place with 21 members of care staff identified as keyworkers to older adults with learning disability living in residential houses provided by Solihull Healthcare NHS Trust, Solihull, UK. The results suggest that staff have knowledge of ageing at a similar level to that of college students. Forgetfulness was the sign that they would most expect to see if they thought someone was suffering from dementia. When a change in behaviour was attributed to dementia, it was most likely to be viewed as ‘stable, uncontrollable’ with staff feeling pessimistic about being able to change the behaviour.     

The relationship between awareness of intellectual disability,causal and intervention beliefs and social distance in Kuwait and the UK

Evidence on lay beliefs and stigma associated with intellectual disability in an Arab context is almost non-existent. This study examined awareness of intellectual disability, causal and intervention beliefs and social distance in Kuwait. These were compared to a UK sample to examine differences in lay conceptions across cultures. 537 university students in Kuwait and 571 students in the UK completed a web-based survey asking them to respond to a diagnostically unlabelled vignette of a man presenting with symptoms of mild intellectual disability. They rated their agreement with 22 causal items as possible causes for the difficulties depicted in the vignette, the perceived helpfulness of 22 interventions, and four social distance items using a 7-point Likert scale. Only 8% of Kuwait students, yet 33% of UK students identified possible intellectual disability in the vignette. Medium to large differences between the two samples were observed on seven of the causal items, and 10 of the intervention items. Against predictions, social distance did not differ. Causal beliefs mediated the relationship between recognition of intellectual disability and social distance, but their mediating role differed by sample. The findings are discussed in relation to cultural practices and values, and in relation to attribution theory. In view of the apparent positive effect of awareness of the symptoms of intellectual disability on social distance, both directly and through the mediating effects of causal beliefs, promoting increased awareness of intellectual disability and inclusive practices should be a priority, particularly in countries such as Kuwait where it appears to be low.