‘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.     

Ambulatory Care Sensitive Conditions in Persons with an Intellectual Disability – Development of a Consensus

Background There is evidence that the primary care provided for persons with an intellectual disability living in the community has been inadequate. Hospitalization rates for ambulatory care sensitive (ACS) conditions are considered an indicator for access to, and quality of, primary care. The objective of this research was to identify ACS conditions that are applicable to persons with an intellectual disability. Materials and Methods We developed and distributed a survey questionnaire using a modified Delphi process. The participants were clinicians with experience working with people with an intellectual disability. Results All eleven conditions that were considered ACS for the general population met the three primary inclusion criteria. Study participants suggested five other conditions of which four met the primary criteria: constipation, gastroesophageal reflux, epilepsy, and schizophrenic disorders. Conclusions There is a very high degree of agreement as to what constitutes an ACS condition for persons with an intellectual disability. The final list has the potential to be used with other populations with cognitive disabilities and outside of Canada.     

Inclusive nursing care for people with intellectual disabilities using urology services

The need to address the health needs and provide equity of access to health care for people with intellectual disabilities has been highlighted nationally within the UK, as well as internationally. Despite a similar likelihood (if not an increased likelihood) of urological problems among people with intellectual disabilities, this topic appears to have received limited attention within the wider nursing or the specific intellectual disability literature. This paper considers the potential challenges that may be encountered in seeking to provide care and support a person with intellectual disabilities who may require the support of a urology nurse and provides some suggestions for practical actions to respond effectively.     

Behavioural sleep problems in children and adults with intellectual disabilities: An integrative literature review

Background

People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well-being.

Methods

An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015.

Results

Within intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability.

Conclusion

A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep.     

Nursing student perceptions of disability and preparation to care for people with intellectual disabilities

As people with intellectual disabilities live longer and develop more chronic illnesses, nurses will have increasing contact with them. Therefore, nurses must have both an accurate understanding of and a positive attitude toward this population to ensure optimal nursing care is received. A cross-sectional survey of second-year and fourth-year nursing students measured their perceptions of disability, their contact with people with intellectual disabilities, and their perceptions of education to prepare them to care for people with intellectual disabilities. Students most often identified disability as physical, using a wheelchair to represent that perception. Students were confident in their ability to transfer many of the skills they learned to care for people with intellectual disabilities but identified a need for more education about providing that care. Curricular changes to enhance nursing students' awareness and understanding of people with intellectual disabilities are recommended.     

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.     

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.     

The Validity of a Personality Disorder Diagnosis for People with an Intellectual Disability

Background It has long been appreciated that people with intellectual disabilities experience mental health problems. Studies into the prevalence of personality disorder in the population of people with an intellectual disability indicate significant variations, which have no clear explanation. Method Work on personality disorder and personality is reviewed. Results This article will outline some of the reasons for the variations in the reported prevalence figures including the impact of diagnostic overshadowing, problems inherent within the diagnostic classification systems and instruments that have a significant impact upon the reliability of a diagnosis. It will also argue that there are some fundamental issues relating to the validity of the construct of personality disorder and its application to the population of people with intellectual disabilities. The article notes that the model of personality, which in itself is not without critics, is derived from research on the general population and has not been integrated with personality research conducted within the population of people with an intellectual disability. Conclusion It is suggested that the current diagnostic systems need to be reviewed in the context of an existing evidence base from within the field of intellectual disabilities. There are grounds to be cautious with the current diagnostic process and to question its clinical utility. Furthermore, diagnosis may only serve as an intermediate step and as part of a more detailed nomothetic approach.     

Stress and the quality of life in the parents of young people with intellectual disabilities

This paper reports the results of a study into stress and quality of life in the parents of young people with an intellectual disability. Research in this area often finds that parents suffer stress as a result of having a son or daughter with an intellectual disability. According to Glidden (1993), this has led to the mistaken perception amongst researchers and professionals in the field that these parents are maladjusted. Glidden's work with parents adopting children with an intellectual disability suggest the parenting may be a satisfying experience and suggests a research focus based on outcomes. In this study the participants, including 102 parents of young people with (44) and without (58) an intellectual disability, were mailed a stress questionnaire and quality of life questionnaire. The results of the analysis of these data demonstrate that the families with a member with a disability report significantly greater stress, they also demonstrated that as stress increases the quality of life decreases. Governments need to address this problem if current policies of integrating people with intellectual disabilities into the community are to be successful. This paper also discusses the reasons natural parents of people with disabilities are dissatisfied while adopting parents are not and suggests further research into this important topic.     

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.     

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.     

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract

People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.     

Identity Conflict in People with Intellectual Disabilities: What Role do Service‐providers Play in Mediating Stigma?

Background This study explores the relationship that the people with an intellectual disability have with their ‘learning disabled’ identity and the influence of intellectual disability services on this relationship. Methods Information was collected using three methodologies: (1) audit of referrals to a community psychology service for people with intellectual disabilities; (2) service‐users focus group; (3) survey of the attitudes of intellectual disability service‐providers. Results The results indicate that the conflict about an intellectually disabled identity may be an area of unmet need in services for people with intellectual disabilities. Conclusions There is a need for careful consideration of the ways in which this identity is managed by service‐providers.     

Utility of the Brief Symptom Inventory in the Assessment of Psychological Distress

Introduction People with intellectual disabilities are now acknowledged to be susceptible to the full range of mental health disorders. This acknowledgement has resulted in the need to develop and evaluate instruments for the assessment and detection of mental health problems. This research evaluates the use of the Brief Symptom Inventory (BSI) with 200 people with mild intellectual disabilities representing community, clinical and forensic populations. Results and conclusions Results illustrate the reliability of the BSI for each of the groups and demonstrates how the Positive Symptom Total (PST) index effectively discriminates between study groups. Case rates for each group are provided. The study illustrates that the BSI could be employed as a brief multitrait assessment instrument and as a treatment outcome measure with people with an intellectual disability.     

The Prevalence of Psychiatric Disorders among People with Intellectual Disabilities: An Analysis of the Literature

Background It has often been stated that the prevalence of psychiatric disorders in people with intellectual disabilities is greater than it is in the population as a whole. Method The epidemiological studies on psychiatric disorders in people with intellectual disabilities were reviewed. Results There is evidence that the prevalence of psychiatric disorder is greater in children with intellectual disabilities, compared with children with normal IQs, that it is higher in both adults and children with severe intellectual disabilities compared with people with mild or no intellectual disability and that the rate of problematic behaviour is higher in both adults and children having intellectual disabilities, than in their non‐disabled peers. Conclusions There is no sound evidence that the prevalence of psychiatric disorders in adults with mild intellectual disability is greater than in the population as a whole.     

Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution

while a.e . & clark l.l. (2009) Journal of Nursing Management  18, 166–172
Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution Aim To propose a strategy for overcoming stigma and discrimination against people with intellectual disabilities within healthcare. Background Evidence of poor healthcare for those with intellectual disabilities resulted in an independent inquiry. The subsequent report has charged healthcare organizations to address current organizational failings. Evaluation The origins of discriminatory practices in health services and the evidence of persisting poor care and stigmatization of this patient group despite UK Government policy are set out. Key issue The stigmatization and resulting discrimination of people with intellectual disabilities persists. Conclusion In addition to investment in core training, organizational change is needed to bring about change and a reduction in health inequality. Implications for nursing management The development of a new framework for nursing is recommended with leadership at all levels of healthcare so that people with intellectual disabilities and their families can expect to receive high quality care in all healthcare settings.     

Cognitive–Behavioural Intervention for People with Intellectual Disability and Anxiety Disorders

Background Distinct cognitive models and treatments have been developed for people without intellectual disability with a wide range of anxiety disorders. However, these have not been reported as applied to people with intellectual disabilities. In fact, much of the cognitive therapy literature for people with intellectual disabilities does not distinguish between different presentations of anxiety. Methods We take the particular example of social phobia and describe the specific cognitive model and associated intervention developed for people without intellectual disabilities. We then consider research on the social context of people with intellectual disability and research on developmental factors predictive of anxiety and make suggestions for adaptation of treatment approaches. Conclusion We suggest that such an approach would be useful to apply to other anxiety presentations and to identify areas for further clinical and research development.     

Pain assessment in intellectually disabled people: non-verbal indicators

BACKGROUND: Although important progress has been made during the past decade, research on pain in people with intellectual disabilities is still scarce. Pain assessment in people with intellectual disabilities is a frequent and difficult problem, especially for nurses working with people with intellectual disabilities on a daily basis. Gathering more information about pain in people with intellectual disabilities is of major importance and relevance for nursing, and adds to the developing body of knowledge. OBJECTIVE: To investigate the nature and relative importance of non-verbal indicators used by nurses to assess pain in people with a severe or profound intellectual disability. METHODS: A questionnaire consisting of 158 indicators of pain was used. A total of 135 nurses from nine institutions specializing in the care of people with intellectual disability were asked to rate each indicator on a scale of 1-10 to show which non-verbal expressions they considered important in diagnosing pain. RESULTS: A total of 109 nurses responded. All 158 indicators were mentioned as being important to indicate pain. All except four had a range of 9. Seven (moaning during manipulation, crying during manipulation, painful facial expression during manipulation, swelling, screaming during manipulation, not using (affected) body part, and moving the body in a specific way of behaving) were reported as 'very important' by more than 50% of nurses. The lowest score (median 5.5; minimum 1, maximum 10) was given to the indicator 'waving arm movements'. The pain of people with severe intellectual disability appeared to be assessed differently from that of people with profound intellectual disability. Indicators belonging to the 'physiological' category scored relatively higher in the group of nurses specializing in profound disability. In contrast, indicators belonging to the 'social-emotional' category were scored relatively higher by nurses specializing in severe disability. CONCLUSION: Nurses used a wide range of indicators to assess pain in people with intellectual disability. Functional abilities and level of disability seem to influence the indicators used.     

Toward mainstream nursing roles specialising in the care of people with intellectual and developmental disability

ProblemThere is international evidence that people with intellectual and developmental disabilities experience barriers to health care and inequalities in health. Nurses are well placed to assist in reducing these inequalities, but countries differ in the way they prepare nurses to meet the needs of people with intellectual and developmental disabilities. Concerns have been expressed regarding a lack of appropriate educational preparation and the impact that this has on the health of this population.AimThis discussion paper describes and explores the model of specialist nursing in Wales, UK with a specific focus on the role of community nurses and the hospital liaison nurse. This is then compared with the current situation in Australia which, it is argued, is fragmented and uncoordinated.DiscussionAlthough some promising developments are noted, it is argued that to effectively identify and meet the health needs of Australians with intellectual and developmental disabilities, a transformation is required to the educational preparation and recruitment of nurses.ConclusionModels of care that are widespread in Wales, UK, offer insights into how mainstream health services in Australia can accommodate specialist intellectual and developmental disability roles for nurses.     

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.