Indexing Psychological Distress in People with an Intellectual Disability: Use of the Symptom Checklist-90-R

The development, usage and clinical utility of psychometric tests for the assessment of mental health problems experienced by people with an intellectual disability has only recently become a clinical issue and subject of methodological debate. In general there are a paucity of measures, little consideration for reliability/validity issues and lack of intellectual disability group norms. In this paper we describe the application of the Symptom Checklist (SCL-90-R) with people with intellectual disabilities. Results suggest that the measure has high reliability and validity with this population and that the SCL-90-R effectively indexes mental health concerns. Significant differences were observed across symptom dimensions and global indices between community and clinical groups. Preliminary norms on the SCL-90-R for intellectually disabled people are provided. The data are discussed in terms of the potential for the SCL-90-R to be used as an outcome measure for intellectually disabled people with mental health problems regardless of the mode of intervention. Guidance is provided for applying the measure with intellectually disabled individuals.     

Specialist Versus Generic Models of Psychiatry Training and Service Provision for People with Intellectual Disabilities

Background Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.     

Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective

Scand J Caring Sci; 2010; 24; 164–174
Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client’s perspective Background: Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. Aim: This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Methods: Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. Results: The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as ‘keeping appointments’ and ‘time and attention’, whereas parents/relatives also referred to broader ‘organisational issues’, such as ‘access to support’ and ‘problems with placement’. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long‐term aspects in care and service delivery.     

A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

Background Twenty six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method Twelve young people were randomly allocated to the treatment group, which had the help of the liaison worker, and 14 young people were allocated to the control group without the help of a liaison worker. Baseline measures were undertaken with all the young people and their carers. This was followed by a 9‐month trial, consisting of the liaison worker helping the treatment group to get in touch with and take up appropriate services, mainly in the areas of psychiatric appointments, benefits advice, house adaptations, leisure facilities and support and care for the young person. The control group participants did not have the access to the liaison worker and were accessing services using the normal routine. Assessments were carried out post‐treatment to assess whether the use of a liaison worker had had any effect on outcomes for the two groups. Results Twelve young people completed the study in the treatment group and 14 in the control group. Participants allocated to the specialist liaison worker had statistically significantly more frequent contact with services and with more outcomes, than the control group, and significantly lower scores on the Strengths and Difficulties Questionnaire (SDQ). Conclusion The use of specialist liaison services in ensuring adequate access to services for young people with learning disabilities and mental health needs from the South Asian community proved to be significant and effective compared with young people and their families accessing services on their own.     

The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service

Aim. This paper reports the challenges experienced by nurses within accident and emergency departments in communicating with and gaining valid consent from adults with intellectual disabilities. Background. Consent is both a legal requirement and an ethical principle required to be obtained by health‐care professionals, prior to the start of any examination, treatment and/or care. Central to the process of seeking consent is effective communication. However, evidence shows that people with intellectual disabilities are not viewed by professionals within acute general hospitals as a vital source of information, neither are they often communicated with directly, nor involved in discussions or decisions about their health care and are frequently not directly asked for their consent. Method. A purposive sample of nurses working within the accident and emergency departments of five general hospitals was recruited to participate in this qualitative study. Data were collected from five focus groups. Findings. Effective communication was identified as the most challenging aspect in caring for adults with intellectual disabilities within this environment, having an impact on the assessment of needs, informing patients of their health status and seeking valid consent. Conclusions. Fundamental to the provision of quality care are the concepts communication, choice and control. However, these issues are perceived to be more challenging in the provision of health care to people with intellectual disabilities. Communication and consent, therefore, require further consideration within the educational and clinical areas to strengthen nurses’ competence in caring for people with intellectual disabilities, with an emphasis and understanding that choice and control are key principles for all people, being central aspects to the provision of an inclusive service for people with intellectual disabilities. Relevance to clinical practice. All nurses need to have a greater awareness of learning disability, how to increase opportunities for effective communication and be very familiar with the issue and guidelines relating to consent, to ensure that people with learning disabilities have choice, control and are more active in decision making regarding their health.     

Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

Aims The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs’ priorities in the delivery of health care services to this group of people in Taiwan. Methods The study employed a cross‐sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on‐the‐job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.     

Schizophrenia in autistic people with intellectual disabilities: Symptom manifestations and identification

Background

The assessment of schizophrenia in autistic people with intellectual disabilities is challenging. This study aimed to explore the identification of schizophrenia in this population.

Methods

Using data from a clinical multi-centre study, reported symptoms in 26 autistic individuals with intellectual disabilities diagnosed with co-occurring schizophrenia were explored. Scores on two checklists (Psychopathology in Autism Checklist [PAC], Aberrant Behaviour Checklist [ABC]) were compared with two comparison groups: autistic individuals with intellectual disabilities and other mental disorders (94), or no mental disorder (63).

Results

Reported symptoms of schizophrenia in this population met the formal diagnostic criteria. For PAC/ABC scales, only PAC psychosis differed for the schizophrenia group. Among participants with schizophrenia, two were diagnosed with additional mental disorders. Elevated scores for anxiety and depression were common.

Conclusions

Emphasising core symptoms seems necessary when assessing co-occurring schizophrenia in autistic people with intellectual disabilities. The PAC may serve as a helpful screening tool.     

Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey

Background People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods A 30‐item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.     

Mental Health Problems in Young People with Intellectual Disabilities: The Impact on Parents

Background Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Method Semi‐structured in‐depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual disabilities and additional mental health problems. Results Parents described far reaching negative consequences of the young person’s mental health problems. In many parents these re‐evoked intense past feelings of grief and triggered feelings of helplessness and despair. Conclusions Parents’ experiences appear to be characterized by confusion, loss and hardship. Services do not seem to be attuned to the high level of emotional and practical needs of these parents.     

The Prevalence,Incidence, and Factors Predictive of Mental Ill‐Health in Adults with Profound Intellectual Disabilities

Background There are no previous studies of the prevalence and incidence of mental ill‐health in adults with profound intellectual disabilities. Method In this population‐based prospective cohort study, adults with profound intellectual disabilities underwent psychiatric assessment (n = 184), with further assessment after 2 years (n = 131). Results Point prevalence of mental ill‐health was 52.2% by clinical, 45.1% by Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities (DC‐LD), 10.9% by the ICD‐10 Classification of Mental and Behavioural Disorders Diagnostic Criteria for Research (1993) (DCR‐ICD‐10) and 11.4% by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (2004) (DSM‐IV‐TR) criteria. The highest 2‐year incidence rates were for affective disorders (6.1%) and problem behaviours (6.1%). Type of accommodation/support, and the number of preceding life events were predictive of incidents of mental ill‐health, but age, gender, living in areas of greatest deprivation, and having special communication needs were not. Conclusions Mental ill‐health is more commonly experienced by adults with profound intellectual disabilities than the general population, or other adults with intellectual disabilities, warranting proactive supports/interventions. Predictive factors differ, compared with the general population.     

Stay Well and Healthy! Pilot Study Findings from an Inhome Preventive Healthcare Programme for Persons Ageing with Intellectual and/or Developmental Disabilities

Background While disparities in the health status for persons ageing with intellectual and developmental disabilities have been well documented, interventions that address individual risks in physical, emotional, social and environmental health among this population are lacking. This pilot study evaluated the feasibility of two inhome interventions designed to reduce health risks and improve health outcomes among persons ageing with intellectual and developmental disabilities. Method Interventions and assessment tools were developed. Adults with intellectual and developmental disabilities, aged 32 and over (n = 201) living in non‐institutional settings were recruited and assigned to either an advance practice nurse (APN) intervention of inhome multidimensional assessment, targeted recommendations and follow‐up visits (n = 101) or an inhome health risk appraisal (HRA) with printed feedback only (n = 100). Results The development and pilot testing of the interventions, assessment tools and methods demonstrated feasibility in the population from mild to moderate intellectual and developmental disabilities. In addition, high levels of health risks were identified (mean = 5.0; range 0–16) in the sample suggesting the need for effective interventions. Both pilot groups showed significant reduction in health risks between baseline and follow‐up. Further rigorous randomized field trials are required to test the effectiveness of each intervention. Conclusions Community‐based preventive interventions are feasible for randomized trials in this population.     

The Use of Validation in Mental Health Nursing for Adults with Intellectual Disabilities and Mental Illness: A Descriptive Study

Mental health nursing for adults with intellectual disabilities and mental illness is understudied. The aim of this study was to investigate the use of validation in mental health nursing for patients with intellectual disabilities and additional mental illness in a specialised psychiatric inpatient setting. Ten nurses/social educators and four individual therapists described the use of validation; each provided three vignettes with clinical examples. The clinical examples support the view that interventions developed for patients in the general population are feasible also for patients with intellectual disabilities. Clinical implications relate to the use of validation as an important factor in mental health nursing for adults with intellectual disabilities. Skills required include being capable of interpreting behavioural equivalents of mental illness symptoms, responding adequately to unusual utterances, and occasionally communicating in a predominantly non-verbal way.     

People with mental disabilities negotiating life in the risk society: a theoretical approach

Risk assessment and risk management owing to the potential threat from people with serious mental disorders living in the local community have been given much attention in psychiatric and mental healthcare research. Research connected to risks associated with living in the community for people with mental disabilities has also been published. This paper focuses on the situation of people with mental health problems and disabilities from a quite different perspective. In the light of the societal change towards what has been named the 'risk society', the consequences for vulnerable groups, especially people with mental disabilities, are discussed. Furthermore, the purpose is to shed light on how structural factors, like the process of individualization and 'de-population' of societal institutions, are affecting the living conditions for people with mental disabilities - positively as well as negatively. The importance of trust in the risk society is highlighted, but also the important role that the local community might play in relation to people with mental disabilities. Finally, some potentialities and new roles that this development towards a risk society and increased individualization paradoxically can open up for people with mental disabilities are outlined.     

Assessment of GPs' beliefs relating to the care of people with intellectual disabilities: a Taiwan-based, opportunity-guided approach

PURPOSE: This study was designed to investigate general practitioners' (GPs) beliefs about the perceived importance of their role in, and their satisfaction with, providing healthcare to people with intellectual disabilities. The identification of healthcare issues with potential for improvement was assessed using gap analysis and an opportunity-guided method. METHOD: A cross-sectional census survey by a mail-structured questionnaire recruited 331 GPs (response rate--16%) who provided information on healthcare for people with intellectual disabilities in 2006 in Taiwan. RESULTS: The results indicated that GPs considered their role in providing healthcare for people with intellectual disabilities to be important (mean score 7.2-8.3). However, the respondents generally did not feel satisfied (mean score 4.6-5.5) with their achievements in treating patients with intellectual disabilities. We found that the gender and educational level of the respondents were statistically correlated to the perceived importance they considered their work to have, while the factors of age, medical practice setting and training experience in intellectual disability were statistically correlated to GPs' perceived satisfaction in providing healthcare to people with intellectual disabilities (p < 0.05). Those healthcare issues of'training and experience in intellectual disability', 'multi-disciplinary and multi-sectoral cooperation', 'adequate competence in disability diagnosis', 'genetic consulting services', 'duty of disease prevention and health promotion', and 'adequate medical consultation time' were the five most promising areas to be improved in healthcare for people with intellectual disabilities according to the opportunity-guided analysis. CONCLUSIONS: This study highlights that health professionals need to examine carefully healthcare issues pertaining to people with ID, and that much more effort is required to develop appropriate healthcare policies based on the opportunity-guided health issues identified here.     

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service‐providers’ Perspectives

Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi‐structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.     

Intellectual impairment and sexual health: information needs

Inclusion into the wider community for people with learning disabilities and intellectual impairment has been problematic for many people and in some cases the result has been an exacerbation of mental health problems or a reduction in adaptive functioning. Research has found that people who have chronic mental illness or intellectual impairment are a sexually active group although they might not always be perceived as such. Therefore, there are questions that may be raised over an identified lack of sexual health promotion and practices surrounding safe sex. This short article will examine particular barriers to sexual health care for this patient group in the areas of consent (to sexual acts, screening and treatment), communication and health promotion in this field. Implications for future practice are discussed.     

Including adults with intellectual disabilities who lack capacity to consent in research

The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that were put in place to protect the rights and well-being of participants are described, and it is argued that the approaches used in this study met the requirements set out in the Mental Capacity Act 2005. Although this paper is based on research involving people with intellectual disabilities, it has implications for research involving other groups who may also lack capacity to consent, including people with mental health problems, head injuries and dementia.     

‘Diagnostic Overshadowing’ Amongst Clinicians Working with People with Intellectual Disabilities in the UK

Background Mental health problems are known to be hard to recognize in people with intellectual disabilities. One factor that may contribute to this is the diagnostic overshadowing bias, which describes the tendency of the clinicians to overlook symptoms of mental health problems in this client group and attribute them to being part of ‘having an intellectual disability’. Although a small amount of research has investigated this in the USA, very little has taken place in the UK. Materials and methods Two clinical vignettes were produced. Both described identical clinical problems, except that one vignette described a man with an IQ of 58 and impaired social functioning (i.e. an intellectual disability) and one a man with an IQ of 108 and normal social functioning (i.e. non‐intellectually impaired). Psychiatrists (n = 274) and clinical psychologists (n = 412) throughout UK were randomly assigned to either the low IQ or normal IQ condition, and sent a corresponding clinical vignette. Results One hundred and thirty‐three psychologists and 90 psychiatrists responded. Diagnostic overshadowing did appear to be present. Clinicians were more likely to recognize a range of symptoms in those with IQs in the normal range than those with intellectual disabilities. Furthermore, psychiatrists appeared more likely to make this error under some circumstances than clinical psychologists. Conclusions Diagnostic overshadowing may contribute to the difficulties that mental health professionals commonly experience in identifying mental health problems in people with intellectual disabilities. However, the methodology commonly used in this type of research has a number of weaknesses, and would benefit from an alternative approach.     

Friendship Activities of Adults with Intellectual Disabilities in Supported Accommodation in Northern England

Background Despite there being considerable evidence to suggest that friendships are central to health and well‐being, relatively little attention had been paid to the friendships of people with intellectual disabilities. Methods Friendship activities involving people with and without intellectual disabilities were measured over the preceding month in a sample of 1542 adults with intellectual disabilities receiving supported accommodation in nine geographical localities in Northern England. Results The results of the study indicate: (1) low levels of friendship activities among people with intellectual disabilities in supported accommodation; (2) people with intellectual disabilities are more likely to be involved in activities with friends who also have intellectual disabilities than with friends who do not have intellectual disabilities; (3) most friendship activities take place in the public domain rather than in more private settings (e.g. at home); (4) the setting in which a person lives is a more significant determinant of the form and content of activities with their friends than the characteristics of participants. Conclusions Further attention needs to be given to research and practice initiatives aimed at increasing the levels of friendship activities of people with intellectual disabilities.     

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.