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Profound intellectual and multiple disabilities : nursing complex needs
PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES
Nursing Complex Needs
Children and adults with profound and multiple learning disabilities (PMLD) are among the most marginalised people in society. They have some of the highest support needs and are most reliant on services. This accessible and practical text presents and promotes current best practice regarding interventions to meet the complex health needs of a person with profound and multiple learning disabilities.
Divided into two sections, Profound Intellectual and Multiple Disabilities first looks at assessing complex needs, exploring topics such as communication, maintaining health, and quality of life. Part two then discusses meeting complex needs, looking at topics such as mental health problems, epilepsy, vision impairment, aural health, respiratory health, nutrition, and dysphagia.
KEY FEATURES:
* Examines current theory and practice in supporting people with profound and multiple learning disabilities and/or complex needs
* Identifies the key knowledge and skills required by learning disability nurses and other health care professionals
* Provides evidence-based best-practice guidelines about caring for people with PMLD
* Offers insights into parent carer and professional carer experiences
eBook
Housing First, Consumer Choice, and Harm Reduction for Homeless Individuals With a Dual Diagnosis
Objectives. We examined the longitudinal effects of a Housing First program for homeless, mentally ill individuals’ on those individuals’ consumer choice, housing stability, substance use, treatment utilization, and psychiatric symptoms. Methods. Two hundred twenty-five participants were randomly assigned to receive housing contingent on treatment and sobriety (control) or to receive immediate housing without treatment prerequisites (experimental). Interviews were conducted every 6 months for 24 months. Results. The experimental group obtained housing earlier, remained stably housed, and reported higher perceived choice. Utilization of substance abuse treatment was significantly higher for the control group, but no differences were found in substance use or psychiatric symptoms. Conclusions. Participants in the Housing First program were able to obtain and maintain independent housing without compromising psychiatric or substance abuse symptoms.
Journal Article
Quality of Life Indicators for Individuals With Intellectual Disabilities: Extending Current Practice
Quality of life is a social construct that is measured by what are considered to be its most appropriate indicators. Quality of life measurement in intellectual disability reflects a variety of indicators, often grouped under life domains. Subjective and objective methods of measuring indicators each have strengths and drawbacks, but it is currently considered best to use both methods. Indicators of quality of life that are common to all people have been measured to date, although indicators that are unique to individuals are highly useful for enhancing individual development and for applying person-centered practice. Aggregate quality of life data from individuals may not always be the best source of information for evaluating policies and service practices. A case is made for supplementing quality of life frameworks or adopting other frameworks for these purposes, with the Capabilities Framework offered as an example. Further, an argument is made that a pragmatic approach might best be taken to policy and program evaluation, whereby the key criterion for using a conceptual framework and set of indicators is its usefulness in effecting positive change in people's lives.
Journal Article
Issues Concerning Self-Report Data and Population-Based Data Sets Involving People With Intellectual Disabilities
This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and communication. However, there are serious doubts about the validity of proxy data for subjective issues. One important challenge with secondary analysis of population-based data sets is the difficulty of accurately identifying survey participants with intellectual disabilities. In both areas examined, it is important to recognize these constraints when interpreting research based on such data.
Journal Article
Use of Vocational Rehabilitative Services Among Adults with Autism
This study examined the experiences of individuals with autism spectrum disorders (ASD) in the US Vocational Rehabilitation System (VRS). Subjects included all 382,221 adults ages 18–65 served by this system whose cases were closed in 2005; 1,707 were diagnosed with ASD. Adults with ASD were more likely than adults with other impairments to be denied services because they were considered too severely disabled. Among those served, adults with ASD received the most expensive set of services. They and adults with MR were most likely to be competitively employed at case closure. Post hoc analyses suggest that their employment was highly associated with on-the-job supports. The results suggest the importance of the VRS in serving adults with ASD.
Journal Article
Effectiveness of the serious game ‘You & I’ in changing mentalizing abilities of adults with mild to borderline intellectual disabilities: a parallel superiority randomized controlled trial
Background
Persons with mild to borderline intellectual disabilities generally show dysfunctions in mentalization and stress regulation, resulting in problematic social relationships and personal distress. Intervention programs may improve mentalizing abilities. The aim of this study is to examine the effectiveness of the serious game ‘You & I’ in changing mentalizing abilities and stress regulation in adults with mild to borderline intellectual disabilities.
Methods
A two-arm, parallel, superiority randomized controlled trial will be used with 172 adults with mild to borderline intellectual disabilities. Participants will be randomly assigned to either the experimental group to play the serious game ‘You & I’ or a waitlist control group. Participants will be assessed at baseline, post intervention (5 weeks after baseline), and follow-up (6–8 weeks after post intervention). They also will fill in questionnaires for personal factors, personal development, personal well-being, social validity, autism spectrum quotient (demographic variables), mentalizing abilities (primary outcome measure), and stress regulation (secondary outcome measure).
Discussion
The serious game ‘You & I’ aims to improve mentalizing abilities in adults with mild to borderline intellectual disabilities, which is expected to lead to improved regulation of stress in social relationships. The study’s unique feature is the use of a serious game to improve mentalizing abilities. If the intervention is effective, the serious game can be implemented on a broad scale in Dutch care organizations for people with intellectual disabilities as an effective preventive tool to improve mentalizing abilities.
Trial registration
Netherlands Trial Register,
NTR7418
. Registered on 2 August 2018.
Journal Article
Decreasing Psychiatric Symptoms by Increasing Choice in Services for Adults with Histories of Homelessness
Despite the increase in consumer‐driven interventions for homeless and mentally ill individuals, there is little evidence that these programs enhance psychological outcomes. This study followed 197 homeless and mentally ill adults who were randomized into one of two conditions: a consumer‐driven “Housing First” program or “treatment as usual” requiring psychiatric treatment and sobriety before housing. Proportion of time homeless, perceived choice, mastery, and psychiatric symptoms were measured at six time points. Results indicate a direct relationship between Housing First and decreased homelessness and increased perceived choice; the effect of choice on psychiatric symptoms was partially mediated by mastery. The strong and inverse relationship between perceived choice and psychiatric symptoms supports expansion of programs that increase consumer choice, thereby enhancing mastery and decreasing psychiatric symptoms.
Journal Article
Developing Behaviour Change Interventions for Improving Access to Health and Hygiene for People with Disabilities: Two Case Studies from Nepal and Malawi
Limited evidence exists about how to design interventions to improve access to health care for people with disabilities in low and middle-income countries (LMICs). This paper documents the development of two behaviour change interventions. Case study one outlines the design of an intervention to improve uptake of referral for ear and hearing services for children in Malawi. Case study two describes the design of an intervention to improve menstrual hygiene management for people with intellectual impairments in Nepal. Both followed existing approaches—Medical Research Council Guidance for developing and evaluating complex interventions and Behaviour Centred Design. The purpose is to demonstrate how these frameworks can be applied, to document the interventions developed, and encourage further initiatives to advance health services targeting people with disabilities. Important components of the intervention design process were: (1) systematic reviews and formative research ensure that interventions designed are relevant to current discourse, practice and context; (2) people with disabilities and their family/carers must be at the heart of the process; (3) applying the theory of change approach and testing it helps understand links between inputs and required behaviour change, as well as ensuring that the interventions are relevant to local contexts; (4) involving creative experts may lead to the development of more engaging and appealing interventions. Further evidence is needed on the effectiveness of these types of interventions for people with disabilities to ensure that no one is left behind.
Journal Article
Physical Activity and Nutrition Health Promotion Interventions: What is Working for People With Intellectual Disabilities?
A scoping review of studies on physical activity and nutrition health promotion interventions for individuals with intellectual disabilities was conducted. Searches included MEDLINE, PsycINFO, and CINAHL databases from 1986 through July 2006. The final number included 11 articles comprising 12 studies. Generally, this review indicated some evidence for fitness and psychosocial benefits of community-based physical activity and exercise programs for adults with intellectual disabilities. When combined with a more comprehensive health behavior education program incorporating exercise and nutrition information, some evidence exists for reductions in weight.
Journal Article