Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.     

OFFENDING BY ADULTS WITH LEARNING DISABILITIES: IDENTIFYING NEED IN ONE HEALTH DISTRICT

The extent to which adults in one health district with intellectual disabilities engaged in offending behaviour and the nature of their need was investigated in a series of three studies. First, the number of adults who reported having learning difficulties or who had attended special needs schools, in a consecutive series of adults charged at a city police station over a two-month period, was identified. Secondly, the extent and nature of offending by those living in residential placements for people with learning disabilities was ascertained retrospectively for the year 1992. In addition, the policies and responses of the residences' managers to offending behaviour were ascertained. Thirdly, a case control study of the outcome in the criminal justice process of those with self-reported learning disabilities identified in Study One was undertaken. Twelve (4.4%) of the 251 people arrested and screened at the city police station had been to a special school for children with mild or severe learning disabilities. Seven (2%) of 358 adults living in residential placements for adults with learning disabilities had been interviewed by police because of an alleged offence. None of this group appeared in Court despite the seriousness of some offences. In Study One, seven (58%) were sentenced by the Courts. None received a prison sentence or were diverted to the health service. The lack of established links between the criminal justice agency and other services and the experience and attitudes of staff in the different agencies both hindered the recognition of the presence of a possible learning disability and also prevented referral across agencies. These and social factors, such as homelessness, all contributed to a failure to provide for the needs of this minority of adults with learning disabilities who became involved in the criminal justice system.     

Effective health care for people with learning disabilities: a formal carers' perspective

This paper explores the perceptions and experiences of formal carers, working in three different geographical locations in the south of England, in accessing primary health care for people with learning disabilities. The sample included six multidisciplinary, community learning disability teams and 11 managers of small homes for residents who had learning disabilities. Data were collected through focus group and individual semistructured interviews. Levels of collaboration between primary health care groups and the community learning disability teams and the managers of small homes were assessed. Questions were focused upon the importance of primary health care and the key care provider within the community setting. Although some good experiences were recorded, the overall levels of collaboration were poor. Health care was perceived as very important by all of the respondents. The general practitioner (GP) as the coordinator of health care was perceived as the normal model within our health care system but the majority of respondents questioned the effectiveness in relation to their own experiences of accessing health care for people with learning disabilities. The relocation of this role to the learning disability nurse was perceived as a possible solution.     

Primary health care provision for adults with a learning disability

BACKGROUND: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability. RESEARCH AIM: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities. RESEARCH METHOD: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate. RESULTS: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team. CONCLUSION: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.     

Outcomes and Costs of Residential Services for Adults with Intellectual Disabilities in Taiwan: A Comparative Evaluation

Background The disability policy in Taiwan has traditionally emphasized residential care in large institutions and, more recently, medium‐sized group homes. This paper compares the relative costs, services provided and outcomes between the traditional institutions, medium‐sized group homes and new small‐scale community living units that were launched in 2004 in Taiwan. Materials and Methods Cross‐sectional analysis was used to investigate the three current residential service models. A total of 248 participants with intellectual disabilities were interviewed, including all residents from the existing 25 small residential units and purposively sampled respondents from the other two residential models. Results Outcomes for the Taiwanese participants were consistent with the existing literature on deinstitutionalization from Western societies. Small homes provided better subjective and objective quality of life than both medium‐sized community‐based units and traditional institutions. Conclusion Participants living in small residential homes experienced better outcomes at lower cost than persons living in medium‐sized group homes or institutions.     

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.     

Resident Involvement in Activity in Small Community Homes for People with Learning Disabilities

Background Determining the relative importance of variables including client characteristics, setting features, staffing and care practices on the lives of people with learning disabilities in residential care continues to be a relevant topic for research. Methods Measurements were made of the adaptive and problem behaviour of 343 adults with intellectual disabilities living in 76 residential homes and of various aspects of staffing, care practices (extent of active support) and resident engagement in meaningful activity. Ordinal and logistic regression was used to identify variables best predicting engagement and care practices. Results Only adaptive behaviour and care practices predicted resident engagement in meaningful activity; only age and adaptive behaviour predicted care practices. Conclusions Given the limited scope for changing resident adaptive behaviour, attention should be given to improve active support in residential homes in order to promote greater engagement in meaningful activity by people with learning disabilities.     

Exploring the similarities and differences amongst service users with and without learning disabilities attending Saint Marys Sexual Assault Referral Centre

Background

People with learning disabilities are over-represented amongst Sexual Assault Referral Centre service users. This work aims to explore the similarities and differences between service users with and without learning disabilities.

Method

Medical notes of 52 service users likely to have a learning disability were compared with 52 service users not likely to have a learning disability (according to the Learning Disability Screening Questionnaire); all of whom attended Saint Marys SARC for a forensic medical examination during a 12-month period.

Results

Significant associations were found between the likelihood of learning disability and relationship to perpetrator; location of assault; alcohol use; time taken to present to SARC; domestic violence; self-harm; suicide attempts and mental health service involvement.

Conclusions

People with learning disabilities in the sexually assaulted population are more likely to present with intersecting vulnerabilities emphasising the need for timely, accessible and appropriate patient-centred care for this group.     

Basic life support and children with profound and multiple learning disabilities

Nurses and other carers of people with learning disabilities must be able to manage choking events and perform basic life support effectively. UK guidelines for assessment of airway obstruction and for resuscitation do not take account of the specific needs of people with profound multiple learning disability. For example, they fail to account for inhibited gag and coughing reflexes, limited body movements or chest deformity. There are no national guidelines to assist in clinical decisions and training for nurses and carers. Basic life support training for students of learning disability nursing at Birmingham City University is supplemented to address these issues. The authors ask whether such training should be provided for all nurses including those caring for children and young people. They also invite comment and discussion on questions related to chest compression and training in basic life support for a person in a seated position.     

Generalization of Anger‐Coping Skills from Day‐Service to Residential Settings

Objective To evaluate the extent to which anger management training provided within a learning disabilities day service generalizes to residential settings. Method Eleven day‐service users participated in one of two anger management groups. Treatment was delivered by day‐service staff and an assistant psychologist, using a standard cognitive‐behavioural therapy (CBT) package shown to be effective in earlier studies. Evaluation was by the Provocation Index and the Profile of Anger‐Coping Skills, which measure, respectively, the potential to react in an angry manner, and the utilization of eight different anger‐coping skills. Results Participants showed a decrease in anger and an increase in anger‐coping skills, which was maintained at 6‐month follow‐up. Similar changes were reported by day‐service key‐workers and by residential carers (and by the participants themselves). At the level of the group, key‐workers and home carers did not differ significantly, at any time, in their ratings of anger, aggregate coping skills or individual coping skills. Within each setting, profiles of coping skills differed between individuals but were relatively stable across the 6‐month follow‐up period. However, there was no significant correlation between the profiles of coping skills reported for individual service users in the two settings. Conclusions The results confirm that group‐based CBT is an effective treatment for people with learning disabilities and anger management problems. Therapeutic gains are maintained for at least 6 months and generalize across settings. Different anger‐coping skills may be used by different people, or by the same person in different environments. A Manual for the group is available on request.     

The Future Care Plans of Older Adults with Intellectual Disabilities Living at Home with Family Carers

The topic of future care provision for adults with intellectual disability living in the family home is becoming of increasing interest to researchers since epidemiological evidence indicates that this group of people will make increasing demands for residential provision in the future. Deriving information from a previously reported study on the structure and characteristics of the informal support networks, this paper describes the future residential and financial provision planned for a group of people with intellectual disability over the age of 40 years living with relatives in the family home and investigates the factors which influence carers' decisions to plan for the future. A semi-structured interview enabled both quantitative and qualitative data to be collected. Results indicated that plans for the future residential care were minimal. Only 28% of carers had made any concrete plans for future residential care of their relative. In the majority of cases, carers were committed to maintaining long-term home care for their relative with intellectual disability for as long as possible. Attention is drawn to the significant number of elderly parental carers (82% of this sample) who have not made concrete future residential arrangements. Carers were more likely to establish financial plans than residential plans for their family member. No clear differences were found between carers to indicate factors influencing whether they had made preparations for the future. Explanations for the reluctance of carers to plan for the future were, therefore, explored. The overall conclusion to be drawn from the research is that ‘crisis’ resettlement due to ill health or death of the main carer is highly likely. The potential role of service-providers is briefly discussed.     

Mainstream In‐Patient Mental Health Care for People with Intellectual Disabilities: Service User,Carer and Provider Experiences

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face‐to‐face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person‐centred practices and active partnership with intellectual disability services.     

PARENTS' VIEWS OF DIFFERENT RESPITE CARE SERVICES

This paper focuses on one part of a three-year study into respite care services to disabled children. Relevant literature in the field is first reviewed and the aims and methods of the research are outlined. The main findings from semi-structured interviews with 160 parents using different types of respite care—family based schemes, local authority residential homes and health authority provision, including hospitals—are reported and discussed. Certain differences emerged between the characteristics of children using different services, notably in terms of age, weight, and level of dependency. Uneven access to services was identified, with black and low income families apparently having limited choice. Significant variation was found in the perceptions of the various service users. Important features of family based schemes were the child-centred nature of the service, the good relationships generally enjoyed by parents and carers and the informality of arrangements. Some benefits were reported for children receiving respite care in residential homes but widespread difficulty in obtaining bookings and instances of poor physical care were significant drawbacks. Parents using health authority provision reported a range of dissatisfactions, mostly associated with the institutional nature of the service.     

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.     

Providing appropriate health care to people with learning disabilities

People with learning disabilities often challenge health services and their carers. Recent reports identify the tragic consequences of services failing to identify and meet this population's health needs. This article integrates a case study of the planned hospital admission of a woman with learning disabilities. A nine-step strategy is adopted to proactively support the patient and associated disability, and general nurse carers to enable both a positive experience and a healthy outcome for all those involved. It is an example of how collaborative working, good reciprocal communication and creative thinking are imperative to effective support.