Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

An analysis of the systemic aspects of rights training for people with intellectual disabilities

Individuals with intellectual disabilities (ID) as a group have been subject to abuse. Individuals with ID need to be made aware of their rights. The 3Rs: Rights, Respect and Responsibility Human Rights Project is promoting rights awareness in individuals with ID, their caregivers and family members. To be effeCtive, abuse prevention must include support from the whole organization and its processes. This research evaluated the impact of the 3Rs initiative on the organization. It focused particularly on descriptions of organizational change perceived by full-time staff and managers in response to the initiation of the 3Rs Project. Behavioural interviews were conducted and a thematic analysis was used to describe changes in the organizational culture and behavioural mechanisms maintaining these changes. Systemic barriers to change were also explored. The results indicate that the Association is effectively implementing and supporting the rights-based philosophy.

Problems with accessibility to health services by persons with disabilities in Sao Paulo, Brazil

Purpose. To describe the occurrence of self-reported problems of accessibility to health services used by persons with disabilities in terms of social and health services variables. Methods. We performed a cross-sectional household survey designed to assess problems with accessibility to health services faced by persons with disabilities. We interviewed 333 persons in Sao Paulo city, in 2007. Variables related to the presence of accessibility problems, disabilities, gender, age, family head income, ethnicity, use of health services and others were analysed using frequencies, percentages, chi(2)-test, ANOVA and Poisson regression models. Results. 15.92% of the interviewed persons reported problems with accessibility to health services. Persons having multiple (prevalence ratios; PR = 2.91) or mobility disability (PR = 6.46) had more problems with accessibility than persons with hearing disability. Persons younger than 78 years old had more problems with accessibility; those who needed help to go to the health service (PR = 3.01) also. Conclusions. Persons with multiple or mobility disability, younger than 78 years, and those who needed help of others to go to the health service were more likely to have problems with accessibility to health services. This information could be one of the first steps to the management and/or planning of appropriate health services for persons with disabilities.

Cardiovascular health behaviours and health needs among people with psychiatric disabilities

Recent research in Australia has found that people with a mental illness experience higher mortality rates from preventable illnesses, such as cardiovascular disease, respiratory disease and diabetes compared to the general population. Lifestyle and other behavioural factors contribute significantly to these illnesses. Lifestyle behaviours that affect these illnesses include lack of physical activity, consumption of a poor diet and cigarette smoking. Research on the influence of these factors has been mainly directed towards the mainstream population in Australia. Consequently, there remains limited understanding of health behaviours among individuals with psychiatric disabilities, their health needs, or factors influencing their participation in protective health behaviours. This thesis presents findings from two studies. Study 1 evaluated the utility of the main components of Roger’s (1983) Protection Motivation Theory (PMT) to explain health behaviours among people with a mental illness. A clinical population of individuals with schizophrenia (N=83), Major Depressive Disorder (MDD) (N=70) and individuals without a mental illness (N=147) participated in the study. Respondents provided information on intentions and self-reported behaviour of engaging in physical activity, following a low-fat diet, and stopping smoking. Study 2 investigated the health care service needs of people with psychiatric disabilities (N=20). Results indicated that the prevalence of overweight, cigarette smoking and a sedentary lifestyle were significantly greater among people with a mental illness compared to that reported for individuals without a mental illness. Major predictors of the lack of intentions to adopt health behaviours among individuals with schizophrenia and MDD were high levels of fear of cardiovascular disease, lack of knowledge of correct dietary principles, lower self-efficacy, a limited social support network and a high level of psychiatric symptoms. In addition, findings demonstrated that psychiatric patients are disproportionately higher users of medical services, but they are under-users of preventive medical care services. These differences are primarily due to a lack of focus on preventive health, feelings of disempowerment and lower satisfaction of patient-doctor relationships. Implications of these results are discussed in terms of designing education and preventive programs for individuals with schizophrenia and MDD.

Iniatives to reduce the use of seclusion and restraints on people with developmental disabilities: a systematic review and quantitative synthesis

Contrary to the expectations articulated in public policy, restrictive interventions are commonly used in support services for people with developmental disabilities. This systematic review and quantitative synthesis was undertaken to investigate whether the use of seclusion and restraints on people with developmental disabilities can be reduced. Searches of the Academic Search Complete, CINAHL, MEDLINE, and PsycINFO electronic databases returned 7226 records, of which 11 met the inclusion criteria for this review. A further 3 papers were obtained through scanning the reference lists of those articles included from the initial literature search. All 14 studies were single-subject designs focusing on initiatives to reduce physical or mechanical restraint. Between the baseline and intervention phases, there were mean reductions in the frequency and duration of restraint use of 79% (SD = 21%, n = 13 subjects from 7 studies) and 45% (SD = 58%, n = 10 subjects from 6 studies), respectively. For studies in which restraint use to manage agitation and aggression was targeted, there was a 79% (SD = 21%, n = 13 subjects from 7 studies) decrease in the frequency and a 28% (SD = 67%, n = 6 subjects from 3 studies) reduction in the duration of restraint. With respect to studies in which restraint use to prevent self-harm was targeted, there was a 71% (SD = 34%, n = 4 subjects from 3 studies) reduction in restraint use. Effect sizes were calculable, using non-overlap approaches, for 9 of the 14 studies. The magnitudes of the effect sizes suggest that, on average, the interventions were effective in reducing the use of restraints. The effects generated in studies where restraint use for self-harm was targeted were typically more pronounced than those in which restraint use for agitation and aggression was addressed. There were broad variations, however, in the percentage reductions in restraint use and in the magnitudes of the effect sizes. Although the findings of this review are encouraging, more research is needed, in which greater attention must be paid to rigorous research design, application, and analysis.

Telepaediatrics and diabetic retinopathy screening of young people with diabetes in Queensland

We have examined the feasibility of a telemedicine-enabled screening service for children and adolescents with diabetes in Queensland. There are approximately 1400 young people with diabetes in Queensland and only about two-thirds of them are screened in accordance with international guidelines. A regional retinal screening service was established using a non-mydriatic digital retinal camera. Seven centres volunteered to participate in the study. During a five-month pilot trial, 83 of the young people with diabetes who attend these centres underwent digital retinal screening (3.7%). Retinal images were sent via email to a paediatric ophthalmologist for review and results were returned via email. A copy of each participant's results was forwarded by mail to the referring diabetes doctor and the participant and family. The majority of the image files (96%) were rated as excellent or good. Only one participant was identified as having an abnormal result. Participants and their families expressed satisfaction with the digital retinal screening process.

Young people with learning disabilities who sexually harm others: the role of criminal justice within a multi-agency response

This paper outlines the key findings from a recent study of statutory service responses to young people with learning disabilities who show sexually inappropriate or abusive behaviours, with a particular focus on the involvement of criminal justice agencies. The study found that although inappropriate sexual behaviours were commonplace in special schools, and that serious acts of abuse including rape had sometimes occurred, education, welfare and criminal justice agencies struggled to work together effectively. In particular, staff often had difficulty in determining the point at which a sexually inappropriate behaviour warranted intervention. This problem was frequently compounded by a lack of appropriate therapeutic services. In many cases this meant that no intervention was made until the young person committed a sexual offence and the victim reported this to the police. As a consequence, young people with learning disabilities are being registered as sex offenders. The paper concludes by addressing some of the policy and practice implications of the study’s findings, particularly those which relate to criminal justice.

Education for all : providing curriculum for students with disabilities in a standards-based environment : implications for Queensland schools

This report investigates lessons learned by educators in the United States when providing a standards-based curriculum for all students including Students with Disabilities (SWD). Assumptions about implementation of these lessons are then made to the Queensland school system. Queensland mainstream schools currently provide a standards-based curriculum for over sixteen thousand-four hundred students with mild-moderate disabilities and appear to be challenged by this new educational reform and its implications to school and teacher practices, beliefs and attitudes. The analysis of US research, literature and educational policy for this report, has provided some implications for Queensland schools in the areas of student participation, achievement and curriculum planning to provide an “education for all”. The analysis and comparison of legislation and policy, which demonstrates some significant similarities, provides greater validity for the application of lessons learned in the United States to the Queensland context. The key findings about lessons learned provides Queensland schools with some assumptions as to why and how they need to refocus school leader and teachers’ practices, beliefs and attitudes to provide an “education for all”. These lessons infer that school leaders and teachers to explicitly focus on equity, expectation, accountability, performance, alignment and collaboration so that effective curriculum is provided for SWD, indeed all students, in the Queensland standards-based curriculum environment.

The role of informal networks in providing effective work opportunities for people with an intellectual disability

Being in paid employment is socially valued, and is linked to health, financial security and time use. Issues arising from a lack of occupational choice and control, and from diminished role partnerships are particularly problematic in the lives of people with an intellectual disability. Informal support networks are shown to influence work opportunities for people without disabilities, but their impact on the work experiences of people with disability has not been thoroughly explored. The experience of 'work' and preparation for work was explored with a group of four people with an intellectual disability (the participants) and the key members of their informal support networks (network members) in New South Wales, Australia. Network members and participants were interviewed and participant observations of work and other activities were undertaken. Data analysis included open, conceptual and thematic coding. Data analysis software assisted in managing the large datasets across multiple team members. The insight and actions of network members created and sustained the employment and support opportunities that effectively matched the needs and interests of the participants. Recommendations for future research are outlined.

Work-Related Subjective Experiences, Work-Related Self-Efficacy, and Career Learning Among People with Psychiatric Disabilities

Work-related subjective experiences and work-related self-efficacy were investigated as candidate correlates of career learning among people with schizophrenia and schizoaffective disorder. Work-related self-efficacy was expected to mediate any observed relationship between work-related subjective experiences and employment status, after controlling for demographic, vocational, and clinical covariates. Baseline measures (n 1 = 104) were repeated at six months (n 2 = 94) and 12 months (n 3 = 94). Work-related subjective experiences and work-related self-efficacy were consistently associated with current employment after controlling for covariates. The proposed mediator role of work-related self-efficacy remains a viable hypothesis requiring further investigation. Both work-related subjective experiences and work-related self-efficacy appear promising as components of the social cognitive career learning theory to help explain career development among people with psychiatric disabilities.

Enhancing employment services for people with severe mental illness: the challenge of the Australian service environment

Objectives:  Comparatively few people with severe mental illness are employed despite evidence that many people within this group wish to obtain, can obtain and sustain employment, and that employment can contribute to recovery. This investigation aimed to: (i) describe the current policy and service environment within which people with severe mental illness receive employment services; (ii) identify evidence-based practices that improve employment outcomes for people with severe mental illness; (iii) determine the extent to which the current Australian policy environment is consistent with the implementation of evidence-based employment services for people with severe mental illness; and (iv) identify methods and priorities for enhancing employment services for Australians with severe mental illness through implementation of evidence-based practices. Method:  Current Australian practices were identified, having reference to policy and legal documents, funding body requirements and anecdotal reports. Evidence-based employment services for people with severe mental illness were identified through examination of published reviews and the results of recent controlled trials. Results:  Current policy settings support the provision of employment services for people with severe mental illness separate from clinical services. Recent studies have identified integration of clinical and employment services as a major factor in the effectiveness of employment services. This is usually achieved through co-location of employment and mental health services. Conclusions:  Optimal evidence-based employment services are needed by Australians with severe mental illness. Providing optimal services is a challenge in the current policy environment. Service integration may be achieved through enhanced intersectoral links between employment and mental health service providers as well as by co-locating employment specialists within a mental health care setting.

Stomp : an interactive platform for people with intellectual disabilities

For people with intellectual disabilities there are significant barriers to inclusion in socially cooperative endeavours. This paper investigates the effectiveness of Stomp, a tangible user interface (TUI) designed to provide new participatory experiences for people with intellectual disability. Results from an observational study reveal the extent to which the Stomp system supports social and physical interaction. The tangible, spatial and embodied qualities of Stomp result in an experience that does not rely on the acquisition of specific competencies before interaction and engagement can occur.