End-of-Life care and people with intellectual disabilities: A multi-media educational resource

Aim This study aimed to develop and evaluate a multi-media educational resource in palliative and end-of-life care for specialist palliative care and intellectual disability services which promoted collaborative working. Methods: A mixed methods design involving three phases was used. Qualitative data were obtained from semi-structured interviews with a purposive sample of professionals (n=30) and family carers (n=5) and from two focus groups with people with intellectual disabilities (n=17). Data were content analysed as outlined y Newell and Burnard (2006). This identified training needs and issues, in end-of-life care for this population which were confirmed through quantitative data from services in a regional scoping study analysed using descriptive statistics. A DVD and manual were developed and evaluated with twelve professionals. Data were collected using a solicited diary, the Readiness for Inter-professional Learning Scale, Likert Scales and an evaluation questionnaire. Thematic analysis and descriptive statistics appropriate to data were used.Results: Findings suggest that this resource demonstrates the need for and benefits of partnership working and transferability of this learning to practice could address issues at end-of-life for people with intellectual disabilities. Conclusions: Findings of this study have importance for partnership working and service provision in end-of-life care for this population.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

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

Resilience factors of university and college students with learning disabilities as revealed through retrospective interviews /

This qualitative study examined resilience factors of eight university and college students with learning disabilities as revealed through retrospective interviews. This study has added to the existing literature surrounding resilience especially as it relates to individuals with learning disabilities. This study may provide additional insight into the emotional impacts of repeated and chronic risks on students with learning disabilities. The major themes that emerged using the interpretive phenomenological analysis method (Smith & Osborn, 2003) were organized under these four major headings: Challenges and Obstacles, Surviving Challenges, Supportive Conditions, and A Journey of Discovery and Hope. An adaptation of the listening guide analytical method (Gilligan, Spencer, Weinberg, & Bertsch, 2003) was also utilized and offered a more personal depiction of the participants and an exploration of the unique contributions their stories made to this study. Specifically, a theme of feeling trapped/wanting to escape emerged as a reaction to adversity faced during elementary school years. Furthennore, this study has demonstrated that for several of the participants, the benefits of positive outlets extended beyond nurturing areas of strength and self-esteem to also include the provision of a short respite from their challenges and enhanced feelings of overall well-being. Additionally, this study may add to the existing literature surrounding character traits evident in resilient students, specifically highlighting the significance of optimism and selfacceptance.

Supporting and maximizing communication between individuals with intellectual disabilities and health care providers

The goal of the present study was to examine the barriers to access in health services faced by individuals with intellectual disabilities (ID), as well as the nature of communication between people with ID and those who are directly involved in supporting their health and well being. The study included in-depth interviews with five adults who have been identified as having ID and are supported by a community agency, five community agency support staff and four physicians who are specialists in supporting people who have ID. A qualitative content analysis approach facilitated the comparative exploration of key themes that each participant group saw as positive or negative influences on health care access and on effective health care communication. Themes drawn from the findings emphasize the unique roles each of these groups plays within the dialogical framework of the health care encounter. Of particular importance to informants was the issue of people with ID being seen as full participants in their own health care who, like all people, are unique individuals and not simply members of an identified or marginalized group. Participants across groups emphasized the need for the health care recipient to be known as an individual who is an expert in her/his own health and well being and, therefore, entitled to full participation with the support of but not control by others.

The practical application of a meta-analysis of deinstitutionalization : adaptive behaviour outcomes and the piloting of a transitional questionnaire for adults with intellectual disabilities

This investigation examined the effects of de institutionalization on the adaptive behaviour and adjustment of adults with intellectual disabilities (ID). In study 1, a meta-analysis was conducted with 23 studies on deinstitutionalization adaptive behaviour outcomes. Deinstitutionalization was associated with modest improvements in adaptive behaviour however outcomes varied across adaptive behaviour domains and other substantive variables. Clinical and service implications of these results were explicated. Noting the trends from the meta-analysis, study 2 used this information in refining and piloting an Agency Transition Survey used to evaluate community transitions for persons with ID. Information derived from the survey was found to be valuable and adequate for the effective evaluation of transitional success. Potential applications of the survey and meta-analysis results were illustrated.

Deinstitutionalization and community inclusion of individuals with intellectual disabilities in Ontario : a case analysis

In the last few decades, there have been significant changes in the way people with intellectual disabilities (ID) live in many countries around the world. Large isolated institutions have been replaced by community-based housing. This study examined the deinstitutionalization process in Ontario and it's effects on the lives of three individuals with ID. A case analysis approach was used allowing for in depth evaluation of the quality of life of these participants following their discharge with a focus on family involvement, community engagement, and choice making. A discrepancy analysis between the Essential Elements Plan (EEP), constructed when they were entering the community placement, and the current living arrangements was also done. The results of this study suggested that with community living comes improvements in family interactions, community engagement, and decision-making. However, these improvements were found to be minimal. Also, little discrepancy was found between the EEPs and their actual placements.

Teaching persons with intellectual disabilities and limited receptive and expressive communication how to recognize and assert their human rights

Persons with intellectual disabilities (ID) are far more likely to be abused than the general population, but there is little research on teaching people with ID about their rights. The goal of this study was to teach four participants with ID and limited communication abilities about their human rights by training them on specific rights topics. The training program included icebreaker activities, instruction on rights concepts, watching and answering questions about videotaped scenarios of rights restrictions, watching and answering questions about role pl ay scenarios of rights restrictions, and responding to brief, low risk in situ rights restrictions imposed by the researchers. Participant performance did not improve significantly or consistently from baseline to training on the questions asked about the videotaped or the role play scenarios, but two of three participants demonstrated defmite improvements in responding to in situ rights restrictions.

Psychotropic medication use by adults with intellectual disabilities living in community settings

This study examined the variables related to psychotropic medication use among 73 adults with intellectual disabilities living in community residential settings in Ontario, Canada over a one-year period based on staff reports. Despite only 16% percent having a documented psychiatric diagnosis, 84% of these individuals were receiving psychotropic medications, and 74% were receiving two or more psychotropic medications (polypharmacy). Anti-psychotics, anti-anxiety medications, and anti-convulsant medications were the most frequently reported drug classes. While problem behaviour was reported for 60% of the participants, only 33% had a formal behaviour plan. There was a significant relationship between the reported number of problem behaviours and the reported number of prescribed psychotropic medications. Reported medication reviews did not adhere to the Canadian 'Consensus Guidelines for the Primary Care of Adults with Developmental Disabilities' (Sullivan et aI., 2006). Results, based on staff reports, suggested incongruence with recommended best practices, and raised concern about over-reliance on psychotropic medication with these individuals. Keywords: intellectual disabilities, psychotropic medication, problem behaviour

A review of instruments developed to measure outcomes for carers of people with mental health problems

Objective: Community-based care for mental disorders places considerable burden on families and carers. Measuring their experiences has become a priority, but there is no consensus on appropriate instruments. We aimed to review instruments carers consider relevant to their needs and assess evidence for their use. Method: A literature search was conducted for outcome measures used with mental health carers. Identified instruments were assessed for their relevance to the outcomes identified by carers and their psychometric properties. Results: Three hundred and ninety two published articles referring to 241 outcome measures were identified, 64 of which were eligible for review (used in three or more studies). Twenty-six instruments had good psychometric properties; they measured (i) carers' well-being, (ii) the experience of caregiving and (iii) carers' needs for professional support. Conclusion: Measures exist which have been used to assess the most salient aspects of carer outcome in mental health. All require further work to establish their psychometric properties fully.

Young people with intellectual disabilities attending mainstream and segregated schooling: perceived stigma, social comparison and future aspirations

Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

Making electronics more accessible to people with learning disabilities

We extended 'littleBits' electronic components by attaching them to a larger base that was designed to help make them easier to pick up and handle, and easier to assemble into circuits for people with learning disabilities. A pilot study with a group of students with learning disabilities was very positive. There were fewer difficulties in assembling the components into circuits, and problems such as attempting to connect them the wrong way round or the wrong way up were eliminated completely.

Interactive sensory objects for and by people with learning disabilities

This project engages people with learning disabilities as co-researchers and co-designers in the development of multisensory interactive artworks, with the aim of making museums or heritage sites more interesting, meaningful, and fun. This article describes our explorations, within this context, of a range of technologies including squishy circuits, littleBits, and easy-build websites, and presents examples of objects created by the co-researchers such as “sensory boxes” and interactive buckets, baskets, and boots. Public engagement is an important part of the project and includes an annual public event and seminar day, a blog rich with photos and videos of the workshops, and an activities book to give people ideas for creating their own sensory explorations of museums and heritage sites.