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.     

The specialist learning disability nurse in Wales

Fisher M. International Journal of Nursing Practice 1997; 3: 188–190
The specialist learning disability nurse in Wales
This paper reflects on the development of services for people with learning disabilities within the United Kingdom and focuses on the role of the specialist nurse. The nurse's contribution to the care of this client group has been the subject of debate and controversy for a number of years. Developments within the learning disability field in Wales in particular are explored, with the All Wales Strategy for People with Learning Disabilities providing the background and context for these developments. An example of how specialist nurses from around Wales came together in order to share good and best practice is discussed. The conclusion is that the specialist learning disability nurse has a great deal to offer, but must be prepared to work together with other professionals as well as service users and their families.     

The size, extent and nature of the learning disability nursing research base: a systematic scoping review

Background

A research base should be of sufficient quality and quantity to inform nursing practice. It must allow nurses to access information about clients’ needs and to identify effective strategies for meeting those needs. This paper presents the findings of a scoping review of ‘learning disability nursing research’. The review aimed to determine whether there is a research base sufficient to support learning disability nursing practice.

Method

We undertook searches of the Cochrane Library and electronic databases (Medline, Psychinfo, Embase, CINAHL and British Nursing Index) for the years 1996-2006. Full references and abstracts were downloaded for papers returned. Papers considered relevant to the topic of the review were organised into three categories according to whether the main focus of the research was people with learning disabilities, carers or family members, or nurses. For each paper, information about the locality of the research, the topic of the research, design/method and sample size was extracted.

Findings

We identified 180 relevant research studies, most of which made use of convenience samples of less than one hundred people. Very few studies evaluated the clinical impact of nursing interventions or the delivery of care by learning disability nurses. A small number of studies examined the impact or patient experiences of nurse-led interventions. These tend to small-scale evaluations of new service initiatives, such as the management of behavioural problems. Overall there was an absence of strong evidence about the effectiveness of specific nursing interventions.

Conclusions

The extent of learning disability nursing research is limited in quantity and it is difficult to draw comparisons across research studies. Much of the available evidence is drawn from small-scale evaluations; which may provide useful guidance and inspiration for service development but do not, in themselves, constitute a sufficient body of research evidence to support learning disability nursing practice.     

How do Australian mental health services use easy read to make information accessible for people with intellectual disability?

Introduction

Access to health information is a right for all people. Easy read information is one strategy used to make information accessible for people with intellectual disability. This research explored how easy read is used and the ways accessible information can address access barriers, with a focus on Australian mental health services.

Methods

Semi-structured interviews were conducted across four sites to explore how easy read was used. Participants (n = 49) were easy read users, health practitioners and staff from services providing mental health care in New South Wales, Australia. An integrated health literacy framework was used to analyse data.

Results

Most mental health staff did not use easy read or other accessible information, and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply health information. This investigation confirmed the limited availability of accessible information resources, including easy read, and the importance of relationships of support when accessing health information.

Conclusion

People with intellectual disability did not routinely have access to mental health information. Substantial change is required to address this disparity.

Implications

Agency policy and processes require change to support staff practices that uphold the right to information. Inclusive practices that incorporate using easy read in health contexts, including mental health, are needed to facilitate change.     

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis

Background

Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users.

Methods

We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation.

Results

Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former-institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections.

Conclusions

Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.     

Using the learning disability screening questionnaire to help identify people with an intellectual disability in homeless services

Background

We explored the accuracy of using the learning disability screening questionnaire (LDSQ) in services for people experiencing homelessness in the United Kingdom.

Method

We examined the concordance between the LDSQ outcomes and assessments of intellectual disability. Seventy adults experiencing homelessness completed the LDSQ. Staff completed the LDSQ and a measure of adaptive functioning for 38 of this group. Nine participants received an intellectual assessment.

Results

Sensitivity and specificity for the LDSQ when completed by staff was 83% and 96% respectively and 50% and 92% when completed by the individual. Seven people had intellectual and adaptive functioning in the intellectual disability range.

Conclusion

The results suggest that the LDSQ would be an appropriate and beneficial screening tool to use within services for people experiencing homelessness. More accurate results would be likely if it were completed by staff.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Disability in post-earthquake Haiti: prevalence and inequality in access to services

Abstract

Purpose: To assess the prevalence of disability and service needs in post-earthquake Haiti, and to compare the inclusion and living conditions of people with disabilities to those without disabilities. Methods: A population-based prevalence survey of disability was undertaken in 2012 in Port-au-Prince region, which was at the centre of the earthquake in 2010. Sixty clusters of 50 people aged 5?+?years were selected with probability proportionate to size sampling and screened for disability (Washington Group short set questionnaire). A case-control study was undertaken, nested within the survey, matching cases to controls by age, gender and cluster. There was additional case finding to identify further children with disabilities. Information was collected on: socioeconomic status, education, livelihood, health, activities, participation and barriers. Results: The prevalence of disability was 4.1% (3.4–4.7%) across 3132 eligible individuals. The earthquake was the second leading cause of disability. Disability was more common with increasing age, but unrelated to poverty. Large gaps existed in access of services for people with disabilities. Adults with disabilities were less likely to be literate or work and more likely to visit health services than adults without disabilities. Children with disabilities were less likely to be currently enrolled at school compared to controls. Children and adults with disabilities reported more activity limitations and participation restriction. Conclusion: Further focus is needed to improve inclusion of people with disabilities in post-earthquake Haiti to ensure that their rights are fulfilled.

• Implications for Rehabilitation

• Almost one in six households in this region of Haiti included a person with a disability, and the earthquake was the second leading cause of disability.

• Fewer than half of people who reported needing medical rehabilitation had received this service.

• The leading reported barriers to the uptake of health services included financial constraints (50%) and difficulties with transport (40%).

• People with disabilities did not participate equally in education or employment and had poorer access to health care.

     

Exploring the Development of Existing Sex Education Programmes for People with Intellectual Disabilities: An Intervention Mapping Approach

Background

People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes.

Methods

Sex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers.

Results

All programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation.

Conclusions

Based on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory‐ and evidence‐based approach.     

Closing the gap: training for healthcare workers and people with disabilities on the interrelationship of HIV and disability

Abstract

Background: HIV and disability are interrelated providing a double burden to HIV endemic countries in East and Southern Africa and their already fragile health systems. Although literature reveals that people with disabilities are particularly vulnerable to HIV and that HIV, its opportunistic infections and treatments can cause disability, only few interventions target this issue and none have been evaluated in this region. Methods: Formative evaluation was undertaken with regard to the effectiveness of a workshop-based intervention for healthcare workers and people with disabilities on the intersection of disability and HIV in order to inform the further development of this intervention. The formative evaluation assessed participants’ perception of the inclusion of disability in HIV services and of opportunities to initiate change after the workshops. It also captured their experiences in utilising knowledge and skills after the workshops using quantitative (short checklist and ranking exercise) and qualitative (semi-structured interviews) methods of inquiry. Frequencies and conventional content analysis were used in the analysis of the data. This study presents an example of applied research conducted under real-world conditions. Results: 60 healthcare workers and people with disabilities took part in this pilot workshop training and participated in the formative evaluation. Healthcare workers and people with disabilities alike identified various barriers to access health services. Reasonable accommodation was perceived as being mainly absent by most participants, while some participants indicated a lack of physical accessibility in the form of universal design. Participants also identified a lack of integration of services and disability-related skills within the healthcare staff. Participants reported a number of enablers, success and challenges while implementing the knowledge from the workshops related to structural issues, service provision and integration. While participants worked on health workers’ attitudes and accessibility of services, screening and referrals practice was not improved through the workshops. Conclusions: Formative evaluation indicates that the workshops can be effective not only in sensitising healthcare workers and people with disabilities to opportunities to improve services for people with disabilities but also to provide knowledge and skills to initiate improvements. Skills that need more practical training (e.g. screening for disability) need to be trained in more detail, and this will inform the adaptation of the workshops. However, the workshop evaluation also revealed that without policy implementation and budget allocations this change would only be limited.

• Implications for Rehabilitation

• HIV, its co-morbidities and treatments cause health conditions and impairments that have the potential to develop into disability.

• People with disabilities are at increased risk of exposure to HIV.

• Rehabilitation professionals, healthcare workers and people with disabilities can be sensitised in a three-day workshop on the relationship of disability and HIV.

• However, the trained participants can only implement no or low-cost elements of interventions, while high-cost interventions need budget allocations at provincial and national level.

     

Work-ability assessment in young adults with disabilities applying for disability benefits

Purpose: To investigate the impact of diagnosis, co-morbidity, secondary conditions (e.g. learning problems, subclinical mental and somatic complaints, addictions, and socio-emotional and behavioral problems) and problems in social context on work ability as assessed by Insurance Physicians (IPs) in young adults applying for a disability benefit.

Method: IPs of the Social Security Institute assessed young adults with disabilities (aged 15–27) applying for a disability benefit (n = 1755). Data were analyzed with multilevel ordinal regression techniques.

Results: Primary diagnosis, co-morbidity and subclinical mental complaints were associated with IP-assessed work ability. Persons with mental health conditions as primary diagnosis were less likely to reach a higher work ability than persons with somatic diseases. Young adults with two or more co-morbid conditions and those with psychiatric or developmental co-morbidity were less likely to reach a higher work ability level than persons without co-morbidity. Young adults with subclinical mental complaints were half as likely to reach a higher IP-assessed work ability than young adults without this condition.

Conclusion: Primary diagnosis, type and number of co-morbid conditions and subclinical mental complaints are associated with IP-assessed work ability. Work-ability assessments among adolescents with disabilities applying for disability benefits still focus mainly on medical factors.

Implications for Rehabilitation

• Work participation of young adults with disabilities is limited.

• Young adults with disabilities often need support to be able to function in social and economic life.

• Adequate work ability assessment of young adults with disabilities and subsequent support may help to improve their participation rates.

     

CitySCaPE: Moving beyond indifference in education for pre-registration nurses about learning disability

People with learning disabilities and Autism continue to suffer from the delivery of ineffective and inadequate care from health services CitySCaPE (City Simulated Community and Practice Environment) is a multi media resource delivering a simulation of situations student nurses may encounter in relation to service users with learning disabilities. The resource is applicable to adult, mental health and children's nursing. It is delivered in a blended approach to students in the first part of their programme as part of their simulated practice. Following the implementation of the resource an evaluation of student experience was undertaken using a mixed methods approach. 146 responses were obtained to a questionnaire containing quantitative and qualitative data. The findings indicate that this is a pedagogy that suits a variety of learning styles, is deemed to be realistic and improves the understanding of nursing students about the care of people with learning disabilities in generic practice areas. It is anticipated that CitySCaPE can be used as a model for delivery of practice based learning in areas that are often challenging to teach and demonstrate using a service user and person centred approach.     

The perceived needs-access gap for health services among persons with disabilities in a rural area within South Africa

Abstract

Purpose: Health should be a universal phenomenon. However, little is known about the relationship between disability status and health issues – particularly in rural areas. This study looks at health issues of persons with disabilities in Madwaleni, a rural impoverished area in South Africa in 2011, and compares them to persons with no disabilities.

Materials and Methods: Standardized questionnaires were used in the survey to assess disability and health status. The sample comprised of 773 individuals – 322 persons with disability and 451 comparisons (without disability) – covering 527 households. Children under the age of five were excluded from the sample. We used purposive sampling.

Results and Conclusion: This study found that persons with disabilities have poorer reported health outcomes than persons with no disabilities. There is also an association between disability severity and mental health issues as assessed by the GHQ-12. A significantly higher percentage of persons with disability did not get health care when needed. Persons with disabilities also have less favorable attitudes toward competence of health care workers. This study has shown greater health needs and less satisfaction with services, which strongly indicates insufficient access for persons with disabilities in a rural impoverished are within South Africa.

• Implications for rehabilitation

• Persons with disabilities in rural South Africa have poorer reported health outcomes.

• Persons with disabilities have less favorable attitudes towards competence of health care workers in rural South Africa.

• Better access to health care for persons with disabilities is needed in rural South Africa.

     

Framing disability among young adults with disabilities and non-disabled young adults: an exploratory study

Abstract

Purpose: To explore how young adults frame disability and to compare the meanings of disability between persons with and without disabilities. Method: Snow ball sampling was used to recruit the participants. The sample comprised of 14 young adults from Upstate New York area; nine were non-disabled, five had a physical disability. Data were collected by semi-structured interviews. Qualitative content analysis was used to analyze the data. Results: Five themes emerged from the analysis: disability as a deviation from “the norm”, disability as inability, disability as something one needs to overcome, the role of the environment in disability, and disability as a negative phenomenon. The findings suggest that persons with disabilities hold somewhat different meanings of disability compared with non-disabled persons. Conclusions: While the biomedical frame of disability was somewhat challenged, disability is mainly understood via a biomedical lens. Disability should be framed as form of human diversity, not as a mark of Cain.

• Implications for Rehabilitation

• The ways through which disability is framed-as a medical issue or a social one-influences social attitudes and behaviors toward persons with disabilities as well as the shaping of disability policies and services. These, in turn, effect the well-being and impact the lives of persons with disabilities.

• In a relatively small sample which comprised of young adults with disabilities and non-disabled young adults, this study shows that while medical definitions of disability are somewhat contested, the medical definition of disability seems to prevail.

     

Assessing health and rehabilitation needs of people with disabilities in Cameroon and India

Purpose: To assess the association between disability and serious health problems, and the access and uptake of health and rehabilitation services in Cameroon and India.

Methods: We undertook a population-based case–control study, nested within a survey in Fundong Health District, North West Cameroon (August–October 2013) and in Mahbubnagar District, Telangana State, India (February–April 2014). Disability was defined as the presence of self-reported difficulties in functioning or clinical impairments. One control without disability was selected per case, matched by age, gender and cluster. Information was collected using structured questionnaires on: socioeconomic status, health, access to health services and rehabilitation.

Results: Cases with disability were significantly more likely to report a serious health problem in the last year compared to controls in both India (OR?=?3.2, 95% CI 2.1–4.8) and Cameroon (OR?=?1.9, 1.4–2.7). The vast majority of people sought care when seriously ill, and this did not vary between cases and controls. Awareness and use of rehabilitation services was extremely low in both Cameroon and India.

Conclusions: Further focus is needed to improve awareness of rehabilitation services among people with disabilities in India and Cameroon to ensure that their rights are fulfilled and to achieve the goal of Universal Health Coverage.

• Implications for Rehabilitation

• People with and without disabilities equally seek health care in India and Cameroon.

• However, people with disabilities experience more frequent serious health problems than people without.

• Extremely few people with disabilities were aware of rehabilitation services despite their existence in the study settings.

     

Assistive technology outcomes in post-secondary students with disabilities: the influence of diagnosis,gender, and class-level

This study investigated how outcomes of assistive technology (AT) services for college students with disabilities are influenced by diagnosis, gender and class-level (e.g., Freshman). Students’ pre- and post-intervention ratings of their performance and satisfaction of common academic tasks (using the Canadian Occupational Performance Measure, COPM) were analyzed, as well as students’ responses on a survey about AT service provision, use, and preferences. Data from 455 students revealed “learning disability” to be the most prevalent diagnosis (38%), similar numbers of females and males served, and Freshmen (23.1%) as the largest class-level seeking AT services. For COPM data, each two-way analysis of variance (ANOVA) (grouping variable?=?diagnosis) revealed that pre-post change scores significantly improved for the entire sample, and that students with a mood disorder experienced the greatest changes compared to other diagnoses. COPM scores significantly and similarly improved for females and males, and across class levels. AT Survey ratings about timeliness of services and independent AT use were significantly lower for students with mobility deficits/pain and neurological damage, respectively. Gender and class-level variables did not significantly impact AT Survey ratings. The study results reveal that features of a college student’s diagnosis may influence AT service outcomes, and student-perceptions of AT services ability to use AT.

• Implications for Rehabilitation

• College students who are Freshman and/or who have a learning disability are the most prevalent students referred for campus-based assistive technology services.

• While student ratings of academic task performance significantly increase across diagnostic groupings, these improvements were greatest for those with a mood disorder compared to other diagnostic groups.

• Service-providers should consider that features of certain diagnoses or disabilities may influence the student?s perception of AT service provision and their ability to use AT.

• A student's gender and class-level (e.g., Freshman) do not appear to influence the outcomes of AT services for college students with disabilities.

     

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England

Background

Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs.

Method

Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent).

Results

Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models.

Conclusions

ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.     

Examining occupational health and safety vulnerability among Canadian workers with disabilities

Objective: To compare workers with and without disabilities on their reported workplace hazard exposure and the presence of occupational health and safety vulnerability factors.

Methods: Working-aged adults in Ontario or British Columbia were recruited to participate in a cross-sectional survey (n?=?1988). Self-reported measures included demographic factors, work-related variables, perceived level of activity limitation at work, and presence of work safety vulnerability factors utilizing a novel framework.

Results: Reporting a disability at work was significantly associated with greater hazard exposure than those without a disability. In addition, those reporting a disability at work were more likely to be employed in conditions where hazard exposure was combined with inadequate policies and procedures, or hazard exposures were combined with inadequate empowerment.

Conclusions: Work safety vulnerability is one way that health inequalities can be perpetuated even among those with disabilities who have found work. Our results suggest that employers and policy makers need to focus on assessing and addressing hazard exposures and targeting occupational health and safety resources in the workplace in a way that includes workers with disabilities.

• Implications for Rehabilitation

• Workers with disabilities experience greater hazard exposure than those without a disability.

• Those with moderate and severe disabilities reported occupational health and safety vulnerability, suggesting that workplace accommodations should be available to a broader range of disability levels.

• It appears that, above and beyond standard safety procedures, providing workplace accommodations for people with disabilities may further reduce their hazard exposure and improve their safety.

     

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.