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.     

A Study of the Knowledge that People with Intellectual Disabilities have of their Prescribed Medication

People with intellectual disability (ID) are frequently prescribed medication for psychiatric and medical conditions. Although knowledge of medication has been researched in other populations, few studies have addressed this issue in people with ID. A questionnaire was administered to 30 people with ID to ascertain the amount of knowledge that they had of their prescribed medication. The questions which appeared to be the most difficult to answer concerned side‐effects of medication, alternatives to medication and other medications which should not be taken in conjunction with the prescribed medication. The findings are discussed.     

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.     

Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

Background Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers’ training needs on diet and physical activity. Methods A cross‐sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Results Sixty‐three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Conclusions Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.     

Australian case managers' views about the impact of antipsychotic medication on mental health consumers

This study examined case managers' views about antipsychotic medications and the impact of side‐effects on mental health consumers in a community setting. Nine case managers were purposively sampled and interviewed. Content analysis was used to generate a series of themes. The findings indicated that case managers perceived that a lack of consumer insight was one of the main reasons for wanting to reduce, or altogether cease, antipsychotic medication. However, case managers lacked an adequate level of knowledge about antipsychotic medication side‐effects. Without a sufficient level of knowledge, case managers may be unable to fully address consumers' concerns.     

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.     

The Development and Utility of a Program Theory: Lessons from an Evaluation of a Reputed Exemplary Residential Support Service for Adults with Intellectual Disability and Severe Challenging Behaviour in Victoria,Australia

Background Adults with severe challenging behaviour can achieve good ‘quality of life’ outcomes in small supported accommodation services. Yet, the research indicates that they typically experience poorer outcomes than other adults with intellectual disability. This raises questions about the degree to which research has informed program design and implementation. Methodology Data from an evaluation of a residential support service outlines a program theory for supporting people with intellectual disabilities and severe challenging behaviour. Results One aspect of the program theory, the practice framework, which details how support staff should interact with service‐users, is illustrated through documentary, observational and interview data. Conclusions Policy and practice should be informed by the knowledge we have about what works. Describing a program theory demonstrates the utility of developing a program theory for human service organizations and underscores the value of practitioners being familiar with the findings of relevant, good‐quality research.     

Medication management: an exploratory study into the role of community mental health nurses

The recent emphasis on community care for those with mental illness has changed working patterns and modified inter-professional role boundaries within multi-disciplinary teams. Clients with serious mental illness are usually prescribed medications, which have a wide range of side effects. However, it is uncertain who is responsible for monitoring clients for the side effects of their medications, ensuring clients' and carers' understandings of their prescribed medications and optimizing compliance with medication. This paper discusses the findings of the first phase of an ongoing study designed to assess the role of community mental health nurses (CMHNs) in managing clients' medication and the provision of appropriate continuing professional education. Our respondents were 14 CMHNs, seven of whom were preparing to undertake a pharmacology module as part of a higher education diploma, and seven who were to act as comparators. Data from questionnaires, interviews and clinical observations were triangulated. All respondents felt that issues surrounding clients' medication were not accorded a sufficiently high profile and that it was, in part, their responsibility to expand their roles to meet these unmet needs of clients. Administering and managing clients' medications were considered to be the main area of 'occupational territory' which distinguished CMHNs from social workers. However, the nurses felt that their practice was limited by lack of appropriate educational preparation.     

Differences in Stress Levels between Managers and Direct Care Staff in Group Homes

A survey examined the differences between managers and direct carers working in community homes for people with intellectual disabilities in terms of the nature and causes of stress. Fifty‐seven managers and 49 direct carers provided data relating to perceived levels of pressure and support from a variety of sources. The questionnaire administered consisted of the Powell questionnaire of sources of stress and support ratings, a stress measure, and information on the background characteristics of participants. Analysis of the data revealed that managers of group homes were reporting higher levels of anxiety and pressure than direct carers. This was associated with managers reporting higher ratings for sources of stress. The implications of these findings are discussed.     

Family Views of the Quality of Residential Supports

The quality and costs of residential supports provided to adults with intellectual disabilities (IDs) living in the UK and Ireland were investigated. The present paper describes findings related to relatives' level of contact with their family members and their appraisal of current residential supports. The relatives ( n = 210) of adults living in campus settings and dispersed housing completed a questionnaire devised to determine their satisfaction with their family members' current residential supports and were invited to name both the features which they like and features which they wish to see improved. Relatives whose family members with IDs lived closer to the family home, who were younger and who took part in more daily activities in their current residence reported higher levels of contact. The respondents believed that current residential supports were better than those previously received. While relatives of residents in campus settings reported higher levels of family contact, satisfaction ratings were similar for relatives of residents in both campus settings and dispersed housing. Staff support, physical aspects of the residences and the standard of care provided were the aspects of residential supports which were most liked; preferred improvements included higher staff ratios and better day activities. Levels of family contact may be predicted by distance as well as by residents' characteristics and type of residence. A considerable overlap among groups of relatives as to ratings of satisfaction and the aspects of residences which they liked was apparent. Research strategies targeting informed appraisals of service quality on the part of both residents and their relatives are proposed.

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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.     

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.     

Violence in the care of adult persons with intellectual disabilities

Background. Violence, for example physical, psychological, financial and sexual abuse and neglect, exists and is an under‐reported problem in caring situations involving adult persons with intellectual disabilities and their caregivers, where both parties can be seen as victims and perpetrators. Aims and objectives. To investigate violent situations involving Swedish adult persons with intellectual disabilities and their caregivers in group‐dwellings. Design. A total population‐based survey. Methods. A questionnaire, including violence towards adults with intellectual disabilities and violence towards staff members during 1 year, was sent to all staff members (n = 164) from 17 care settings for adults with intellectual disabilities with a response rate of 74%. Results. Thirty‐five per cent of 122 respondents admitted they had been implicated in or witnessed a violent incident towards an adult person with intellectual disabilities and 14% of the staff members admitted they themselves had been the perpetrators. Sixty‐one per cent of the staff members described various situations when they were exposed to violence from an adult person with intellectual disabilities. Physical violence was most frequently reported. Most of the aggression occurred in helping situations when persons with intellectual disabilities did not co‐operate or when both actors reacted with violence. The violent situations led the staff members to feel powerless and inadequate. In order to cope they discussed with each other or with the manager. Conclusions. Violence seems to be accepted as a natural part of the daily care for adult persons with intellectual disabilities. Most of the violence is physical and psychological and occurs in close helping situations. Relevance to clinical practice. Supportive interventions, i.e. supervision for the staff members and training of communication skills individually or in group for the adults with intellectual disabilities.     

Adverse Side Effects of Psychotropic Medication and Challenging Behavior: Pilot Work Assessing Impact

Psychotropic medications are often prescribed to reduce challenging behavior in individuals with intellectual and developmental disabilities (IDD). Functional analyses (FAs) have demonstrated utility in assessing medication impact on behavior; however, the impact of adverse side effects (ASE) on challenging behavior is under-assessed. The purpose of this study was to develop a methodology, similar to FAs, to explore potential medication ASE impact on challenging behavior in seven individuals with IDD. Results revealed response rate differences in designed ASE conditions for most participants. Outcomes support further development and use of this methodology to assess the presence and impact of ASEs.     

PRN usage before and after discharge from a forensic inpatient unit: A series example of patients with intellectual disabilities

Adults living with intellectual and developmental disabilities are often prescribed psychotropic medication on an “as needed” basis (PRN) in response to behavioural challenges. In the present study we conducted a retrospective analysis of medication administration records in the 6-months preceding and following discharge of 11 adults with intellectual and developmental disabilities to community settings from forensic inpatient units within a mental health hospital. We found a significant reduction in the frequency of PRN usage after discharge. We propose potential reasons for the difference in PRN administration across settings and make suggestions for future research.     

Communication Supports in Congregate Residential Care Settings in Ohio

Background Communication skills are important to the pursuit of increased self‐determination in individuals with disabilities. The aim of this investigation was to gather information about communication supports in state‐run residential care facilities in Ohio, and to compare findings with a previous investigation on this topic examining such perceptions in group home environments. Methods An online survey was adapted from DeSimone & Cascella [Journal of Developmental and Physical Disabilities, 17 , 2005 , 1] to examine perceptions of habilitation managers regarding the quality of communication supports in their settings. Perceptions of communication supports by program manager‐level staff in larger group residential facilities had not been previously investigated. Results Respondents reported a generally high quality of communication supports provided in their settings. Despite this general level of perceived quality, certain quality indicators related to supports for communication were relatively lower across respondents and were consistent with DeSimone & Cascella.