Prognostic models for identifying adults with intellectual disabilities and mealtime support needs who are at greatest risk of respiratory infection and emergency hospitalisation.

BACKGROUND: Among adults with intellectual disabilities (ID), problems with eating, drinking and swallowing (EDS), and an associated need for mealtime support, are common, with an estimated 15% of adults known to specialist ID services requiring mealtime support. We set out to identify which adults with ID who receive mealtime support are at an increased risk of respiratory infections and emergency hospitalisation related to EDS problems. METHOD: An exploratory, prospective cohort study was undertaken in the East of England. At baseline, structured interviews with the caregivers of 142 adults with ID and any type of mealtime support needs were used to gather information on health and support needs over the previous 12 months. These interviews were repeated at follow-up, 12 months later. The resulting dataset, covering a 24-month period, was analysed with logistic regression, using model averaging to perform sensitivity analysis, and backwards step-wise variable selection to identify the most important predictors. RESULTS: Individuals with a history of respiratory infections (in the first year of study), those who had epilepsy and those with caregiver-reported difficulty swallowing were most likely to have respiratory infections in the second year. Adults with increasing mealtime support needs, epilepsy and/or full mealtime support needs (fed mainly or entirely by a caregiver or enterally) were at increased risk of emergency hospitalisation for EDS-related problems. CONCLUSIONS: Our findings highlight the importance of carefully monitoring health issues experienced by adults with ID and EDS problems, as well as their eating, drinking and swallowing skills. However, the models developed in this exploratory research require validation through future studies addressing the EDS problems commonly experienced by adults with ID and their implications for health outcomes and quality of life. Further research into the relationship between epilepsy and EDS problems would provide much-needed insight into the complex relationship between the two areas.

'What vision?': experiences of Team members in a community service for adults with intellectual disabilities.

BACKGROUND: In the UK, the closure of 'long-stay' hospitals was accompanied by the development of community teams (CTs) to support people with intellectual disabilities (IDs) to live in community settings. The self-reported experiences of staff working in such teams have been neglected. METHODS: Focusing on a single county-wide service, comprising five multi-disciplinary and inter-agency CTs, we measured perceptions among the health care and care management Team members of (1) their personal well-being; (2) the functioning of their team; and (3) the organisation's commitment to quality, and culture. RESULTS: Almost three-quarters of the questionnaires were returned (73/101; 72%). The scores of health care practitioners and care managers were very similar: (1) the MBI scores of more than half the respondents were 'of concern'; (2) similarly, almost four in ten respondents' scores on the Vision scale of the TCI were 'of concern'; (3) the perceived commitment to quality (QIIS-II Part 2) was uncertain; and (4) the organisational culture (QIIS-II, Part 1) was viewed as primarily hierarchical. DISCUSSION: The perceived absence of a vision for the service, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises the ability of these CTs to respond proactively to the needs of people with IDs. Given the changes in legislation, policy and practice that have taken place since CTs were established, it would be timely to revisit their role and purpose.

Knowledge exchange and integrated services: experiences from an integrated community intellectual (learning) disability service for adults.

BACKGROUND: This paper examines knowledge exchange dynamics in a specialist integrated intellectual (learning) disability service, comprising specialist healthcare provision with social care commissioning and management, and considers their significance in terms of integrated service delivery. METHODS: A qualitative study focusing on knowledge exchange and integrated services. Semi-structured interviews (n = 25) were conducted with members of an integrated intellectual disability service in England regarding their perceptions of knowledge exchange within the service and the way in which knowledge exchange impinges on the operation of the integrated service. RESULTS: Exchange of 'explicit' (codifiable) knowledge between health and care management components of the service is problematic because of a lack of integrated clinical governance and related factors such as IT and care record systems and office arrangements. Team meetings and workplace interactions allowed for informal exchange of explicit and 'tacit' (non-codifiable) knowledge, but presented challenges in terms of knowledge exchange completeness and sustainability. CONCLUSIONS: Knowledge exchange processes play an important role in the functioning of integrated services incorporating health and care management components. Managers need to ensure that knowledge exchange processes facilitate both explicit and tacit knowledge exchange and do not rely excessively on informal, 'ad hoc' interactions. Research on integrated services should take account of micro-scale knowledge exchange dynamics and relationships between social dynamics and physical factors.

The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs.

BACKGROUND: Adults with intellectual disabilities (ID) experience a wide range of eating, drinking and/or swallowing (EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. METHODS: Using an exploratory, population-based cohort study design, we set out to examine health-related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill health, and all-cause mortality. This study was conducted in two counties in the East of England. RESULTS: In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow-up 1 year later, 127 individuals were alive, eight had died and seven could not be contacted. Almost all participants had one or more consultations with a general practitioner (GP) each year (85-95%) and, in the first year, 20% reportedly had one or more emergency hospitalizations. Although their annual number of GP visits was broadly comparable with that of the general population, one-fifth of this population's primary healthcare use was directly attributable to EDS-related ill health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardized mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems). CONCLUSIONS: All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life-threatening illness.

Hypothalamic-pituitary-adrenal (HPA) axis activity in adults with intellectual disabilities: a preliminary investigation.

BACKGROUND: Cortisol is a marker of physiological arousal, exhibiting a characteristic pattern of diurnal activity. The daily cortisol profile has been xamined extensively and is atypical in a number of clinical disorders. However, there are very few studies focussing on the cortisol profile in adults with intellectual disabilities (ID). This paper reports a preliminary investigation into the nature of the cortisol profile in adults with mild or moderate ID and provides reflections on the challenges of psychophysiological research in this population. METHODS: On two consecutive days, 39 adults with mild or moderate ID each donated saliva samples for cortisol analysis, at multiple times between waking and evening. A comparison between these data and the published literature permitted a descriptive assessment of the cortisol awakening response (CAR) and diurnal profile. A variety of psychometric measures and an assessment of behavioural history were also collected in order to describe aspects of the participants' emotional and behavioural states. RESULTS: Individuals with ID exhibit a diurnal cortisol secretion profile, qualitatively similar to that of the typical, healthy, adult population. However, the findings also suggested a blunted CAR, warranting further investigation. There was also some evidence that cortisol secretion was affected by anxiety and a recent history of aggression. CONCLUSION: While further work is required to characterise the CAR fully, there was no indication that the diurnal cortisol profile among people with ID differs from that of the typical population. This study also demonstrates that, although challenging, it is feasible, and acceptable to participants, to collect repeated physiological measures from men and women with mild and moderate ID.

The psychological impact of abuse on men and women with severe intellectual disabilities.

BACKGROUND: In other populations, the psychological impact of abuse has been conceptualized as Post Traumatic Stress Disorder (PTSD, DSM-IV, American Psychiatric Association (APA), 1994), but little is known about whether this is appropriate for adults with severe intellectual disabilities and very limited communication skills. METHODS: An informant interview, based on the framework provided by PTSD, but supplemented with additional questions, was developed and was used to elicit the emotional, behavioural and physiological symptoms of alleged abuse in 18 people with intellectual disabilities at three time points: in the 3 months immediately prior to the alleged abuse (Time 1), in the 3 months immediately after the abuse (Time 2) and in the last 3 months prior to interview (Time 3). RESULTS: The reports of the family and carer informants indicated that, following their alleged abuse, the victims experienced marked increases in the frequency and severity of emotional, physiological and behavioural symptoms of psychological distress. Over time, there was some alleviation of these difficulties, but psychological functioning remained severely compromised. CONCLUSIONS: While the established PTSD framework is appropriate for examining the psychological impact of abuse, some amendments are required to enable clinicians to examine fully the distress of alleged victims with severe intellectual disabilities.

The extent and nature of need for mealtime support among adults with intellectual disabilities.

BACKGROUND: For many adults with an intellectual disability (ID), mealtimes carry significant health risks. While research and allied clinical guidance has focused mainly on dysphagia, adults with a range of physical and behavioural difficulties require mealtime support to ensure safety and adequate nutrition. The extent of need for and nature of such support within the wider ID population has yet to be reported. METHODS: In this study, we have estimated the prevalence of need for mealtime support among people with ID in the UK, using a population of 2230 adults known to specialist ID services (in Cambridgeshire, UK, total population 586,900). In a sample (n = 69, aged 19 to 79 years, with mild to profound ID), we characterised the support provided, using a structured proforma to consult support workers and carers providing mealtime support, and health and social care records. RESULTS: Mealtime support was found to be required by a significant minority of people with ID for complex and varied reasons. Prevalence of need for such support was estimated at 15% of adults known to specialist ID services or 56 per 100,000 total population. Within a sample, support required was found to vary widely in nature (from texture modification or environmental adaptation to enteral feeding) and in overall level (from minimal to full support, dependent on functional skills). Needs had increased over time in almost half (n = 34, 49.3%). Reasons for support included difficulties getting food into the body (n = 56, 82.2%), risky eating and drinking behaviours (n = 31, 44.9%) and slow eating or food refusal (n = 30, 43.5%). These proportions translate into crude estimates of the prevalence of these difficulties within the known ID population of 11.9%, 6.6% and 6.4% respectively. Within the sample of those requiring mealtime support, need for support was reported to be contributed to by the presence of additional disability or illness (e.g. visual impairment, poor dentition and dementia; n = 45, 65.2%) and by psychological or behavioural issues (e.g. challenging behaviour, emotional disturbance; n = 36, 52.2%). CONCLUSIONS: These findings not only highlight the need for a multidisciplinary approach to mealtime interventions (paying particular attention to psychological and environmental as well as physical issues), but also signal the daily difficulties faced by carers and paid support workers providing such support and illustrate their potentially crucial role in managing the serious health risks associated with eating and drinking difficulties in this population.

Brief psychological interventions for borderline personality disorder. A systematic review and meta-analysis of randomised controlled trials.

BACKGROUND: People with Borderline Personality Disorder (BPD) have limited access to long term psychological therapies. Briefer interventions have been developed but trial evidence to support their use has not been reviewed. AIMS: To examine whether psychological interventions for adults with BPD of six months duration or less improve symptoms, mood, self-harm, suicidal behaviour, and service use. METHODS: The protocol was prospectively registered (PROSPERO CRD42017063777). Database searches were conducted up to April 2020. Inclusion, data extraction and risk of bias were assessed in duplicate. We identified 27 randomised controlled trials. We conducted random-effects meta-analyses sub-grouping data into delivery method, additional support, and comparison type. RESULTS: High levels of bias were found for attrition and reporting. Heterogeneity was high in some pooled data. Borderline symptom reductions were greatest for interventions including additional support (SMD. -1.23, 95% C.I. -2.13, -0.33). Planned generic support may be as effective as specialist interventions for borderline symptoms (SMD = -0.11, 95% C.I. -0.51, 0.29) and social functioning (SMD = -0.16., 95% C.I. -0.65, 0.33). Follow-up was limited and direct comparison with post-intervention results was unreliable. CONCLUSIONS: Short-term interventions may be effective. Access to additional support has an impact on outcomes. It is unclear if symptomatic change is sustained.

Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities.

In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her 'best interests'. However, the value of adopting established principles and procedures for substitute decision-making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day-to-day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live 'a life like ours'. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision-making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of 'good' care.

Participation in the 2005 general election by adults with intellectual disabilities.

BACKGROUND: International and UK legislation confirms and supports the right of adults with intellectual disabilities (ID) to vote. It is widely accepted, although not previously empirically confirmed, that citizens with ID are under-represented at the polls. METHOD: To document the extent of their under-representation at the polls, the names and addresses of adults using services for people with ID in one county in the UK, were compared with the marked electoral register following the 2005 general election. Adults using services for people with ID were identified either as un-registered, as registered to vote but not having voted, or as having voted. RESULTS: Adults with ID living in the county at the time of 2005 general election were substantially under-represented at the polls. Compared with the general population, proportionally fewer of them were registered to vote, and proportionally fewer of them voted. Compared with adults living in private homes, those in supported accommodation were more likely to be registered to vote, but less likely to use their vote. The most significant predictor of participation was living in a household with at least one other active voter. CONCLUSIONS: The importance of the close proximity of an active voter is likely to be different for adults in supported accommodation compared with those living in private households. Further research is required to understand what features of these two very different types of residences are affecting voting opportunities.

Understanding of basic financial concepts among adults with mild learning disabilities.

OBJECTIVE: In the context of recent legal and social policy developments, which encourage clinicians to support vulnerable adults in making their own financial decisions, we explored understanding of basic financial concepts among adults with mild learning disabilities. METHOD: Using the literature about typically developing children, five measures entailing identification and ordering tasks were devised and were used to examine understanding of quantity, numbers and money among 30 men and women using specialist clinical services (mean FSIQ = 61.80; SD=10.59). RESULTS: The concept of quantity was easier to understand than those of numbers and money, and task difficulties increased with the magnitudes involved. The different types of conceptual understanding were closely related. CONCLUSIONS: These measures may be useful for analysing difficulties in, and informing interventions to maximize, independent financial decision making.

Self-harm, capacity, and refusal of treatment: implications for emergency medical practice. A prospective observational study.

OBJECTIVES: In the context of increasing attention to the rights of adults to make treatment decisions for themselves, this study investigated, among patients who have engaged in self-harm (i) the extent of valid decision making; (ii) the impact of mental disorders; and (iii) the effect of systematically providing relevant clinical information. DESIGN: A prospective observational study. SETTING: The emergency department of a large teaching hospital in southeast England. PARTICIPANTS: Seventy one adult men and women who had presented for treatment following self-harm. MAIN OUTCOME MEASURES: Semi-structured interviews were used to make clinical judgements about participants' capacity to consent before, and following, the presentation of simple written information about the proposed treatment(s). Demographic data, and data about mental disorder and alcohol misuse, were also collected. RESULTS: Based on accepted legal criteria, only 28/71 (39.4%) of the patients were judged to have capacity to consent to the proposed intervention(s) initially. However, the number of patients judged to have capacity improved significantly (p<0.001) after the presentation of written information, to 45/71 (63.4%). Those judged incapable were significantly more likely (p<0.01) to refuse treatment. Continuing incapacity was significantly associated only with cognitive impairment (p<0.001) and/or severe psychiatric disturbance (p<0.01). CONCLUSIONS: Consistent with current views, capacity is not static, even among patients who have engaged in self-harm, but can be improved through a simple intervention. The findings are consistent with recent guidance about supporting this vulnerable group of patients, many of whom are ambivalent about treatment.

A comparison of mental health legislation from diverse Commonwealth jurisdictions.

INTRODUCTION: In the regulation of involuntary treatment, a balance must be found between duties of care and protection and the right to self-determination. Despite its shared common roots, the mental health legislation of Commonwealth countries approaches this balance in different ways. When reform is planned, lessons can be learned from the experiences of other countries. METHOD: Criteria for involuntary treatment used in a sample of 32 Commonwealth Mental Health Acts were compared using a framework developed from standards derived from the Universal Declaration of Human Rights. Reasons for non-compliance were considered and examples of good practice were noted. Changes in the criteria used over time and across areas with differing levels of economic development were analysed. RESULTS: 1. Widespread deviation from standards was demonstrated, suggesting that some current legislation may be inadequate for the protection of the human rights of people with mental disorders. 2. Current trends in Commonwealth mental health law reform include a move towards broad diagnostic criteria, use of capacity and treatability tests, treatment in the interests of health rather than safety, and regular reviews of treatment orders. Nevertheless, there are some striking exceptions. DISCUSSION: Explanations for deviation from the standards include differing value perspectives underpinning approaches to balancing conflicting principles, failure to keep pace with changing attitudes to mental disorder, and variations in the resources available for providing treatment and undertaking law reform. Current good practice provides examples of ways of dealing with some of these difficulties.

The sterilisation of people with intellectual disabilities in England and Wales during the period 1988 to 1999.

BACKGROUND: In England and Wales, if a person is thought to lack capacity to make a decision to undergo a sterilisation operation, a specific process occurs. A Judge sitting in the Family Division of the High Court receives evidence from relevant parties including psychiatric and gynaecological experts and subsequently decides on the lawfulness of the sterilisation operation. We have investigated who was referred and by whom, the reasons given, and the outcomes of the legal process during an 11-year period. METHODS: A retrospective case note study was undertaken of all referrals to the Official Solicitor's Office for sterilisation between 1988 and 1999. Using an established protocol, information was obtained from legal and clinical notes relating to the initial referral to the Official Solicitor, the opinions of experts, the court proceedings and the outcome. RESULTS: Seventy-three people, only three (5%) of whom were men, were referred over the 11 years. They were aged between 12 and 41 years. All but one had an intellectual disability (ID). Seventy-five per cent were living at home and did not have partners. Full applications were made for 50 of the 73 (68.5%), 39 proceeding to a court hearing. For 31 of the 39 (79.5%) cases, the court ruled that sterilisation would be in the person's 'best interests'. An additional six women probably had operations resulting in sterilisation without court authorization. CONCLUSIONS: Referrals for sterilisation are almost always for people with IDs. In the case of the majority, it was thought that it was unlikely that they had had or will have in the future a sexual relationship. Care needs to be taken in interpreting the results in this case note study. We hypothesize that the request for sterilisation is the consequence of a complex process reflecting concerns about the future, but in the context of other family issues. The relationship between lacking the capacity to consent to sterilisation and the capacity to consent to sexual intercourse needs further exploration. Future studies including interviews with those involved are required.

The impact of alleged abuse on behaviour in adults with severe intellectual disabilities.

BACKGROUND: People with intellectual disabilities (ID) are particularly vulnerable to abuse, and most incidents come to light through victim disclosure. Those people with severe or profound ID are not able to describe what has happened to them. This project aimed to describe the consequences of abuse and changes in behaviour following alleged abuse in 18 adults with severe ID. METHOD: Family members or other carers were interviewed to collect information about the alleged abuse. They were also asked about the person's adaptive and challenging behaviours at three time points: in the 3 months immediately prior to the abuse (time 1), in the 3 months immediately after the abuse (time 2) and in the 3 months prior to interview (time 3). RESULTS: A typical pattern emerged for both adaptive and challenging behaviours: there were few problems or difficulties at time 1, major difficulties at time 2 and some recovery by time 3. CONCLUSIONS: Evidence is mounting that clinicians considering the sequelae of abuse for people with severe or profound ID need to consider changes in adaptive and challenging behaviours, as well as the typical symptoms of post-traumatic stress disorder.

Capacity to make financial decisions among people with mild intellectual disabilities.

BACKGROUND: Although there has been growing recognition of the importance of enabling people with intellectual disabilities (ID) to be more directly involved in managing their own financial affairs, so far, little is known about this aspect of their decision- making. METHOD: Using vignettes and semi-structured interviews, the financial decision-making abilities of men and women with mild ID (n=30; mean FSIQ =61.80; SD=10.59) were compared with those of their counterparts in the 'general population' (n=16; mean FSIQ=101.56; SD=7.62) and 'very able' individuals (n=14; mean FSIQ=123.93; SD=7.60). RESULTS: Whilst the financial decision-making abilities of participants with ID were generally weaker than those of other participants, the differences were not discrete, and many individuals were judged to be able to make at least some personal financial decisions. For all three groups, understanding information relevant to the decision, and reasoning with it, were the hardest parts of the process. CONCLUSIONS: The findings support a functional approach to the assessment of financial decision-making for both legal and clinical purposes, but raise concerns about mental incapacity legislation and assessment.

The relationships among three factors affecting the financial decision-making abilities of adults with mild intellectual disabilities.

BACKGROUND: Among adults with intellectual disabilities (IDs), there is a need not only to assess financial decision-making capacity, but also to understand how it can be maximized. Although increased financial independence is a goal for many people, it is essential that individuals' decision-making abilities are sufficient, and many factors may affect the development of such abilities. METHOD: As part of a wider project on financial decision-making, we analysed previous data from a group of 30 adults with mild IDs, identifying correlations among four variables: (i) financial decision-making abilities; (ii) intellectual ability; (iii) understanding of some basic concepts relevant to finance; and (iv) decision-making opportunities in everyday life. RESULTS: The analysis indicated a direct relationship between ID and basic financial understanding. Strong relationships of a potentially reciprocal nature were identified between basic financial understanding and everyday decision-making opportunities, and between such opportunities and financial decision-making abilities. CONCLUSIONS: The findings suggest that the role of intellectual ability in determining financial decision-making abilities is only indirect, and that access to both basic skills education and everyday decision-making opportunities is crucial for maximizing capacity. The implications of this are discussed.

The Human Genome Project: considerations for people with intellectual disabilities.

The paper discusses the impact which recent advances in gene technology may have for people with intellectual disabilities. It highlights a conflict between the apparent benefits of advances in genetics for the population in general and the negative effects on persons with intellectual disabilities in particular. This conflict is illustrated in the paper through the use of examples, including the implications of a person's lack of capacity to consent to investigations and treatment; the issue of individual responsibility for antisocial behaviour when this is considered to have a genetic component; and the issue of life and death decisions about treatment in the face of a progressive, genetically determined, disorder. The authors adopt a human rights perspective to discuss these examples because it provides a richness to articulate and justify moral concerns in this area which is lacking in much of the current debate as this is dominated by the primacy of autonomy.

Prevalence of criminal offending by men and women with intellectual disability and the characteristics of offenders: implications for research and service development.

The investigation of the relationship between criminal offending and the presence of an intellectual disability (ID) is problematic for two main reasons. First, because of problems associated with the definition of 'ID' and secondly, because much criminal offending goes undetected or unreported, and studies can only investigate those already involved with the criminal justice process. Studies using IQ as a continuous variable indicate that significantly below-average intellectual ability is an independent predictor of future offending. Whilst people with ID may be over-represented in parts of the criminal justice system, given the intellectual and other psychosocial disadvantages which they experience, the level of offending behaviour in this particularly vulnerable group is strikingly low. The present authors propose that two broad groups of people can be identified. The first, broader, group is one of people for whom social disadvantage and mental ill health (particularly substance abuse), coupled with a significant intellectual impairment, are the main characteristics. Secondly, there is a smaller group of people, usually already known to ID services as service users, but for whom the process whereby what might have been conceptualized as 'challenging behaviour' becomes 'offending' is far from clear. The distinction the present authors make between challenging behaviour and offending is important for understanding how 'difficult' behaviour becomes identified as 'antisocial/criminal behaviour'. They argue that research needs to move from prevalence and descriptive studies to investigating the processes which determine movement in and out the criminal justice system. The present political emphasis on public protection and proposals for significantly broader mental health legislation raise the danger of a re-expansion of institutional models of care, rather than the development of multi-agency support networks. The present paper underscores a note of caution, particularly where choices have to be made between expanding institutional models on the one hand and providing more integrated services on the other. Over and above policy decisions, these are social and political choices.