Interpersonal Sources of Conflict in Young People with and without Mild to Moderate Intellectual Disabilities at Transition from Adolescence to Adulthood

Background Interpersonal conflict is a source of stress and contributes to poor mental health in people with mild to moderate intellectual disabilities. Understanding the contexts in which conflict typically occurs can better equip services to help people with such difficulties. However, existing studies into the contexts of conflict have included participants with wide‐ranging ages and may not reflect the experiences of young adults in particular. Materials and Methods Twenty‐six young adults (16–20 years) with intellectual disabilities and 20 non‐disabled young adults completed a semi‐structured interview about a recent experience of interpersonal conflict. Participants were asked to describe their beliefs and feelings about the event and their subsequent response. Results Participants with intellectual disabilities were more likely to encounter conflict with strangers or peers outside their friendship group and to describe incidents of aggression than non‐disabled participants. They were also more likely to characterize the other person globally as ‘bad’ and to perceive the other’s actions as being personally directed at them. Young women with intellectual disabilities were less likely to describe responding aggressively to incidents. Conclusions Findings suggest that young adults with intellectual disabilities are often the target of overt aggression from those outside their inner social sphere, while their non‐disabled peers are more likely to experience conflict with people close to them. Young adults with intellectual disabilities may also be more likely to feel victimized by interpersonal conflict. Implications of these findings and limitations of the study are discussed.     

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.     

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.     

Paying the Piper and Calling the Tune? The Relationship Between Parents and Direct Payments for People with Intellectual Disabilities

Background The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities. Materials and methods The paper draws on a UK‐wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families. Results Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family. Conclusions The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.     

Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

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.     

‘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.     

The Balancing Act: Meeting the Needs of all Children Including an Adolescent with Disabilities

Background The aim of this study was to explore parents’ experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. Materials and methods A qualitative study design was employed. The study was conducted in two phases. (i) Secondary analysis of ecocultural interviews with 12 parent‐carers of more than one child, including an adolescent (10–21 years) with intellectual disabilities. (ii) In‐depth, semi‐structured interviews with a sub‐sample (n = 4) of parent‐carers. Data was analysed using Strauss & Corbin’s (1998) constant comparative method. Results Parents balanced their children’s needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children’s needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritized the needs of the adolescent with disabilities or siblings. Conclusions Findings add to knowledge on what families of adolescents with disabilities do day to day and specifically reveal how these parents meet the needs of their children. Practitioners, together with disability and mainstream services and systems, need to recognize parents’ goals, beliefs and values and the needs of the adolescent with disabilities. This will effectively aid the adolescent with disabilities, their siblings, parents and the whole of family life.     

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.     

Constructing Adulthood in Discussions About the Futures of Young People With Moderate‐Profound Intellectual Disabilities

Background This study examines how those planning futures for young people with moderate‐profound intellectual disabilities invoke, deploy and interpret contrasting definitions of adulthood and perceived capacity for autonomy and self‐determination. Methods Twenty‐eight young people were followed through transition from children’s to adult services. This paper incorporates data from interviews with young people, their carers and transition staff. Results Two discourses around adulthood were identified. One positioned the young people as adults entitled unequivocally to self‐determination, invoking policy injunctions to do so. The second qualified the young people’s adult status and claims to self‐determination, emphasising the obdurate reality of intellectual disability. Conclusions Transition to adult services for young people with intellectual disabilities raises difficult questions about the relationship between vulnerable young people, families, professionals and society. Reducing these to rigid moral polarities of ‘right’ and ‘wrong’ creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders in discerning ‘the right thing to do’.     

Health in People with Intellectual Disabilities: Current Knowledge and Gaps in Knowledge

Background The health needs of people with intellectual disabilities have recently received increasing attention. Method Based on a review of the 2003 literature, this paper presents an overview of our knowledge on physical, mental and social well‐being in this group. Results Physical well‐being is threatened by handicap‐related conditions, syndrome‐related health problems and lifestyle characteristics. Conclusion Gaps in knowledge include insufficient evidence on health disparities, the lack of comparability of data on the prevalence of ill heath, lack of expertise in relation to communication problems and the fact that all knowledge is based on research in developed countries, while people with intellectual disabilities in developing countries face the same or even greater health problems. Recommendations concerning evidence, education and empowerment are formulated.     

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.     

Transitions: Placing a Son or Daughter with Intellectual Disability and Challenging Behaviour in Alternative Residential Provision

Introduction The timing of moves to alternative care has implications for the effective support of people with intellectual disabilities and their families. Essex et al. (1997 ) proposed three transition profiles: ‘normative’, ‘stress process’ and ‘postponed’. The applicability of these profiles to people with intellectual disabilities and challenging behaviour was tested. Methods Qualitative analysis of interviews with families of 13 males and five females aged between 11 and 35 years, who had left home, was undertaken. Results Few people moved due to ‘normative’ family life cycle changes. The majority left because of family difficulties (‘stress process’). This model was elaborated and three transition routes described: ‘forensic’– involving police contact (actual/potential), ‘family’– reflecting problems in the family and ‘service’– deficits leading to placement out of district. Conclusions This research suggests that people (particularly young men) with intellectual disabilities and challenging behaviour enter statutory care earlier than their counterparts, and people with different levels of intellectual and physical disabilities follow different transition routes.     

Mental Health Needs in Adolescents with Intellectual Disabilities: Cross‐Sectional Survey of a Service Sample

Background Little research has been conducted on the mental health needs of adolescents with intellectual disability, despite the severity and rates of such needs being high throughout childhood and in adulthood. We have investigated the prevalence and predictors of mental health needs and service use in adolescents with intellectual disabilities. Materials and Methods Service‐based sample (n = 75) in one catchment area. Individual assessments were carried out. The main outcome was the presence of mental health needs measured by the Developmental Behaviour Checklist. Results Prevalence of mental health needs increased from 51% as reported by parents to 67% as judged by clinical interviews. Caseness was associated with low adaptive functioning, diagnosis of autism and family history of mental illness. High scores on parent reports of participant mental ill‐health showed negative correlations with adaptive functioning scores. Most individuals were in receipt of social and health care. Half of the participants had sought help for mental health needs. Almost half of those receiving medication were on psychiatric medication. Conclusions Adolescents with intellectual disabilities may have considerable mental health problems which are functionally impairing yet frequently unidentified and hence untreated. Identification of those at risk and undertaking of a comprehensive needs assessment are essential to maximize potential and quality of life and to reduce further deficits and social exclusion.     

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

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

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.     

Women be Healthy: Evaluation of a Women's Health Curriculum for Women with Intellectual Disabilities

Background Insufficient attention has been paid towards treating the unique health needs of women with intellectual disabilities. This paper describes an 8‐week curriculum, ‘Women Be Healthy’, developed for women with intellectual disabilities to help them become more equal partners in their health care. The curriculum includes psycho‐education, coping skills training, exposure to the medical setting and assertiveness training. Materials and methods Twenty‐two women completed assessments of health knowledge, health behaviour beliefs and coping strategies, prior to and following participation in the 8‐week curriculum, which took place in a group setting at a clinic for people with intellectual disabilities. Results Women showed significant improvements in health knowledge, health behaviour beliefs and coping strategies following intervention, and maintained some of these treatment gains (health knowledge and health behaviour beliefs) at a 10‐week follow‐up. Conclusions ‘Women Be Healthy’ is an example of a group‐based intervention that helps women with intellectual disabilities become more knowledgeable and perhaps more comfortable with health‐care procedures.     

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.     

Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.     

Is self‐directed mental health recovery relevant for children and young people?

Consumer‐directed, personal recovery‐oriented mental health services are now the focus of mental health policies around the globe. However, there has been minimal debate about how the approach applies to young people. This study sought to address this gap through a Delphi approach, using three rounds of surveys, to gain a convergence of opinion from Australian Child and Adolescent Mental Health Service (CAMHS) practitioners regarding the relevance of personal recovery for children and adolescents. The findings suggest that concepts of personal recovery are appropriate for a young population. However, parents and carers are integral to the mental health recovery journeys of young people, either directly as guardian/decision‐maker and/or indirectly through the impact of caring for a young person with mental health problems. Further exploration of the relevance and application of personal recovery in the context of young people is warranted, particularly from the perspectives of adolescents, younger children and carers of young people with mental health problems.