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Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

Background Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. Methods Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. Results Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. Conclusions This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

Background: Nurses provide technical and relational skills that are integral to the care of people with intellectual disability (ID) in Australia. However, little is known about the demographic pro...

Children with intellectual disability (ID) experience chronic and pervasive limitations across intellectual and adaptive functioning. They are also at risk of developing co-morbidities. They are likely to be hospitalised more frequently and for longer periods of time than other children. The purpose of this study was to understand the experiences of nurses when caring for children and teenagers with ID in an acute paediatric hospital setting. The aim of the research was to inform future directions for the delivery of equitable and effective care for this vulnerable population. This study used a qualitative thematic analysis of individual interviews conducted with eight registered and enrolled nurses who provided care to children and adolescents with ID in an Australian paediatric acute hospital setting. Themes which emerged from this analysis were (1) Recognising similarities and managing differences; (2) Nurse–parent relationships; and (3) Caring for children with ID requires additional time. This study highlights that navigating care delivery and relationships when working with young people with ID and their caregivers in an acute care setting is complex. Nursing children with ID in hospital requires sophisticated skills. To ensure quality healthcare for patients with ID, a range of strategies are proposed.

Objective: To describe the roles that Australian nurses play, the breadth of skills that they deploy, and the range of contexts in which they practice. Study design and methods: This cross-sectional study used a descriptive survey where data were collected online using Qualtrics©. Survey respondents were nurses whose primary role was caring for people with intellectual and developmental disability. In addition to demographic data, the main outcome measures were: nursing roles, practice and context. Results: Complete responses were collected from 101 nurses; 78 females and 22 males completed the survey, the majority of whom (n=70) were from New South Wales. The major focus of care was direct assessment and care, followed by supervision of support workers, education, and advocacy for people with intellectual and developmental disability. Physical healthcare was consistent across body systems, as it was for all adaptive behaviour domains. Support for mental illness was more likely to be for depression and anxiety. Nurses liaise with a multitude of health and social agencies as part of their nursing practice. Discussion: This is the first study to capture the roles, practice and contexts of these Australian nurses. Nurses caring for people with IDD play a variety of roles and engage in a vast array of practice related to the physical and social needs of people with intellectual and developmental disability across the whole of the lifespan and in multiple, disparate contexts. Conclusion: It is important for the ongoing care of people with intellectual and developmental disability that the value added by this nursing workforce not be overlooked as disability and health policies evolve. Implications for research, policy and practice: This cross sectional study lays the groundwork for further research about these Australian nurses, in particular more focussed research about the economic benefits of disability services employing nurses, description and effect of nursing interventions specific to people with intellectual and developmental disability, as well as theoretical work to conceptualise new, National Disability Insurance Scheme-ready, models of nursing care for people with intellectual and developmental disability. What is already known about the topic?• In the Australian context, little is known about the contemporary roles and practice of nurses who care for people with intellectual and developmental disability.What this paper adds:• This paper offers a detailed and modern insight into the roles and nursing practice of this marginalised group of nurses. Although all nurses offer physical nursing care, unique to these nurses is the breadth and depth of social, behavioural, emotional and adaptive behaviour support across the lifespan.

Objective To identify how existing specialty practice standards can inform the development of specialty practice standards for intellectual and developmental disability nurses. Setting As the National Disability Insurance Scheme is implemented across Australia, the role of the registered nurse in caring for people with intellectual and developmental disability will change dramatically. Access to widely available, specialty practice standards will be necessary for the development of this field of nursing. Method A descriptive design was used to identify the characteristics of speciality nursing practice standards published in Australia. A web search for all Australian nursing organisations and/or associations was conducted between 1st June and 30th August 2017 using Google and Google Scholar. Once finalised, the first author led preliminary categorisation of all the published standards into a table that was cross-checked and edited by the research team until agreement was reached on terminology and content. Primary argument Thirty-three of sixty-nine specialist nursing associations in Australia have publicly accessible specialty practice standards. The content of these standards can be categorised in six primary ways which reflect the categorical organisation of the Nursing and Midwifery Board of Australia practice standards. This suggests that "nursing" is a unifying identifier in the context of superficially disparate sub-specialty areas of practice. Therefore, existing nursing practice standards can be used to inform the development of new practice standards for specialist intellectual and developmental disability nurses. Conclusion Newly developed specialty practice standards need to reflect the beliefs and values about nursing prescribed in the Nursing and Midwifery Board of Australia standards if intellectual and developmental disability specific practice standards are to be useful for developing this field of nursing.

Aims and objectives To identify the specialist role/s that nurses perform and the specialist skills that nurses use when caring for people with intellectual disability. Methods Adhering to the "Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement," various subject headings were used to systematically search six electronic databases for articles published in English between 2000 and 2017. A total of 27 articles were reviewed. Results The literature demonstrates that similarities exist between the physical care delivered to people with intellectual disability and that delivered to people without intellectual disability. However, skills in the areas of communication, advocacy and person-centred care differ between these two groups. Discussion Our findings suggest that the skill set of the specialist intellectual disability nurse is not uniquely technical but it is uniquely relational that incorporate increased patience and resilience when developing relationships with the people they care for. Conclusion This review has provided insights into the main differences in the skills required when working with people with intellectual disability compared to working with those without. However, minimal literature was identified that adequately describes what is unique about the performance of the role of specialised intellectual disability nurses-especially in Australia. Relevance to clinical practice Understanding the skills required of nurses caring for people with intellectual disability provides the opportunity for more nurses to develop these specialised relational skills and for this branch of nursing to attract professional recognition that is currently limited.

This chapter about the experience of choice and control by adults with intellectual disability in the family context is offered against the background of the tripartite ecological theory of self-determination (Abery and Stancliffe, A tripartite-ecological theory of self-determination. In Wehmeyer et al. (Eds.), Theory in self-determination: Foundations for educational practice (pp. 43–78). Springfield, IL: Charles C. Thomas, 2003). The challenges in determining readiness for adult decision-making are discussed, as are the experiences of adults with intellectual disability when exercising choice and control within the family context. How families, including parents and siblings, influence decision-making by their family member with intellectual disability is summarized. The critical role of the family in supporting independent choice-making is also highlighted. The chapter ends with a call for research about skills and resources for families to become effective, knowledgeable, and confident supporters of their member with intellectual disability in the quest for adult self-determination.

The research about understanding the end of life and decision-making by people with intellectual disability is in its infancy. There are many unknowns, limited by the available empirical research. In this chapter we report the evidence combined with best clinical practice. The chapter focuses on end of life in older age where the person has time to make choices. We do not address the tragedy of sudden and unexpected death, wherein there has been no or little time to make decisions. Emphasis is given to how families, carers and professionals (We use the term “caregivers” throughout the chapter as the collective term to include families, carers and professionals, unless otherwise specified.) can ensure that the person with intellectual disability is central in end-of-life decision-making and can meaningfully participate in end-of-life care planning.

To explore the perceptions of Australian nurses working in disability-specific settings and/or roles, about: (a) nursing people with intellectual and developmental disability living in Sydney; and (b) the utility and applicability of professional practice standards designed specifically for intellectual and developmental disability nursing.A qualitative research design was used to guide the study and our analysis utilized the constant comparative approach to thematic data analyses.Individual in-person interviews were conducted with 18 nurses working in intellectual and developmental disability-specific settings and/or roles across the state of New South Wales between July - December, 2017. Participants described what it is that sets intellectual and developmental disability nursing apart from other nursing specialties, and the rewards and challenges of their role. Questions were also asked about professional practice standards in general and more specifically intellectual and developmental disability professional practice standards. Data were analysed thematically.Three themes reflected intellectual and developmental disability nurses' perceptions: (a) a unique investment in the nurse/patient dyad; (b) a bridge between disparate systems; and (c) an ambiguous future. Nurses reported variable understanding of professional practice standards designed for intellectual and developmental disability nursing, but also a belief in their importance.The intellectual and developmental disability nurses' experience of care accounts for the specific needs of patients with intellectual and developmental disability and suggests the importance of professional practice standards which acknowledge the changing landscape of care in Australia prompted by the implementation of the National Disability Insurance Scheme.目的: 探讨澳大利亚护士对以下问题的看法:(a)悉尼的智力和发展残疾护理人员;(b)专为智力和发展残疾护理设计的专业实践标准的实用性和适用性。 设计: 采用了定性研究设计指导研究,分析采用了主题数据分析的持续比较方法。 方法: 与18名护士个人面谈,他们在2017年7月至12月间工作于新南威尔士州的智力和发育残疾特定环境和/或发挥此类智能。参与者描述了使智力和发展残疾护理与其他护理专业的区别,以及他们工作的回报和挑战。还询问了一般专业实践标准,具体而言,即智力和发展残疾专业实践标准。数据按主题进行了分析。 研究结果: 产生了三个智力和发展残疾看法的主题: (a)对护士/病人的独特投入;(b)不同系统之间的联系;和(c)不确定的未来。护士反应,他们对专为智力和发展残疾护理设计的专业实践标准有不同的理解,但也相信这些标准的重要性。 结论: 智力残疾和发展残疾护士的护理经验考虑到了智力残疾和发育残疾患者的特殊需求,并表明专业实践标准的重要性,该标准反应了澳大利亚因国家残疾保险计划的实施引起的护理格局变化。.

Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.

In Australia the disability sector is radically changing the way services are offered to people with disability under the National Disability Insurance Scheme (NDIS; National Disability Insurance S...

Australia's implementation of the National Disability Insurance Scheme (NDIS) relies heavily on a skilled workforce, competent to meet the needs of scheme participants. This article raises concerns about NDIS workforce planning issues as they relate to people with intellectual disabilities and complex support needs. The article uses population level measures to estimate the likely significant presence of NDIS participants with intellectual disabilities and complex support needs, and summarises the predicted growth in the disability workforce. Using these data together with the research literature, a number of challenges to developing and maintaining the skills of the workforce are proposed. If the NDIS is to ensure a workforce ready to support participants with intellectual disabilities and complex support needs, these challenges require immediate action, the absence of which could mean the very real potential of market failure for this vulnerable group.

Purpose– This commentary takes Marslandet al.’s paper about services at risk of becoming abusive to the people they support, as a platform to consider issues around implementation science and its role in minimising this risk. The paper aims to discuss this issue.Design/methodology/approach– The commentary is a selected review of implementation science. The research is used to define implementation, identify prerequisites, selectively review methods and comment on fidelity.Findings– The commentary proposes that implementation science has an important role in ensuring evidence-based practice transfers from research to disability services.Originality/value– The commentary offers a viewpoint based on combined research evidence and clinical practice.

Knowing about dying and death is a typical part of lifelong learning, gained through personal experience with the death of loved ones, popular culture, and formal education. Sudden and unexpected d...

Background\ud This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end‐of‐life planning, and fear of death.\ud \ud Methods\ud Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments.\ud \ud Results\ud We evaluated comprehensibility, internal consistency, inter‐rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events.\ud \ud Conclusions\ud People with ID can reliably complete assessments about end‐of‐life. Generally, each instrument was found to be comprehensible, reliable and valid.

Background The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death. Method Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. Results There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. Conclusions The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients’ understanding, and when conversations about the end of life should occur.

Background The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Method Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. Results While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the ‘opportunity’ to engage. Four ‘opportunities’ were identified: ‘when family die’, ‘incidental opportunities’, ‘when clients live with someone who is dying’ and ‘when a client is dying’. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. Conclusions People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability.

Background Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. Methods We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. Results We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. Conclusions We demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.

There has been increasing international, national and local recognition of the need for more appropriate responses and services for individuals who come in contact with the criminal justice system and who have an intellectual disability and mental health issues. This article provides an overview of prevalence data that indicates a significant over representation of people with intellectual disabilities in correctional facilities and reviews the problems facing this population. Findings from two specific evaluation studies undertaken by the Centre for Developmental Disability Studies are presented, along with recommendations for future provision based on these results. One of these projects trialled a case management approach to supporting offenders with an intellectual disability upon their release from prison. The 20-month follow-up found that a number of serious barriers were encountered within the overall system of provision for this population; the most serious of which related to lack of adequate accommodation upon release. The second project involved a two-stage evaluation of one model of provision for individuals with intellectual disabilities who are sex offenders, only some of whom were on parole. This service provided both residential and therapy services in a small group home located in the community. Residents were found to have high levels of emotional and behavioural difficulties, in addition to offending behaviour, that continue to require support and supervision. Critical issues, including guardianship involvement, restrictive practices and retrieval, therapy provision, and risk management issues are discussed in relation to overall clinical and lifestyle outcomes.

Background The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. Materials and Methods Focus groups and individual interviews were conducted, guided by grounded theory methodology. Results The current status of end-of-life care and dying comprised five key ‘issues’: knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with ‘partners’, including the dying person, other clients, fellow staff, family, external health services and the coroner. Conclusions End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.

Direction repulsion is the illusory expansion of the angle between two directions of motion, and may occur when the two directions are presented simultaneously (an illusion) or successively (an aftereffect). Here we demonstrate that the motion direction illusion (DI) and aftereffect (DAE) have different mechanisms. Two experiments show that when the two interacting stimuli are presented to different eyes, the DI is greatly reduced but the DAE is obtained at near to full strength. These results suggest that different populations of cells within the visual pathway produce the DI and DAE.