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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The ‘Jack Jumper Ant’ (JJA; Myrmecia pilosula species complex) is the major cause of ant sting anaphylaxis in Australia. Our aims were to determine the allergenicity of previously described venom peptides in their native forms, identify additional allergens and if necessary, update nomenclature used to describe the allergens according to International Union of Immunological Societies criteria. Methods: Various polyacrylamide gel electrophoresis methods were used to separate JJA venom. Gel resolved venom was Western-blotted and probed with individual sera taken from patients with a history of JJA sting anaphylaxis and immunoglobulin E radioallergosorbent test (IgE RAST) tracer uptakes of >1% to whole venom. Results: Of 67 available sera, 54 had RAST uptakes >1%. Thirteen IgE binding bands were identified using these sera. Pilosulin 3, [Ile5]pilosulin 1, and pilosulin 4.1 were recognized by 42 (78%), 18 (33%) and nine (17%) of the 54 sera that were tested. Immunoglobulin E-binding proteins with estimated molecular masses of 6.6, 22.8, 25.6, 30.4, 32.1, 34.4 and 89.8 kDa were each recognized by three or more individual sera. Two of these (25.6 and 89.8 kDa) were recognized by 46% and 37% of sera, respectively. Conclusion: Nomenclature used to describe JJA venom allergens has been revised. Pilosulin 3 (Myr p 2) is the only major allergen, whilst [Ile5]pilosulin 1 (Myr p 1), and pilosulin 4.1 (Myr p 3) are minor allergens. There are an additional five IgE-binding proteins that require further characterization before they can be named as allergens. These findings provide a framework for standardizing venom extracts for diagnosis and immunotherapy. [ABSTRACT FROM AUTHOR]

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.

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.

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., (© 2018 John Wiley & Sons Ltd.)

During the terminal phase, access to medicines is critical for people wishing to spend their last days of life at home. Yet, access to medicines can be problematic. The aim of this study was to report the perspectives of specialist and generalist health professionals (HPs) on the issues of community access to medicines for this vulnerable group. A qualitative descriptive study design investigated the views of HPs working in palliative care roles in South Australia. Nurses, doctors and pharmacists described their experiences of accessing medicines for management of terminal phase symptoms during semi-structured focus group discussions. Content analysis identified six themes including: 'Medication Supply', 'Education and Training', 'Caregiver Burden', 'Safety', 'Funding' and 'Clinical Governance'. Future projects should aim to address these themes when developing strategies for the management of people wishing to die at home.

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., (© 2012 Blackwell Publishing Ltd.)

Background: In Australia, primary healthcare is largely delivered through two parallel systems: Medicare supported primary care delivered by fee-for-service general practitioners, and state funded and managed community health services., Methods: Semistructured interviews with 18 GPs to investigate the current links between GPs and local primary healthcare providers., Results: Barriers to links include: communication and information, access and availability of services, GP lack of awareness and understanding of services provided in the state funded sector, and lack of time to gain information. Discussion General practitioners reported dealing with more complex and challenging patients. However, this did not appear to increase their likelihood of engaging with state funded primary healthcare services in case management. Medicare Locals are a once-in-a-generation chance to establish a genuinely coordinated and multidisciplinary primary healthcare sector. To be successful, Medicare Locals will need to bring together two parallel systems of care and improve integration and coordination.

This Australian study sought to understand how practitioners of the traditional systems of what is now termed complementary and alternative medicine (CAM) are responding to the adoption of their traditional medicine therapies by the mainstream health care system, and the practice of these therapies by mainstream health care practitioners. A grounded theory approach was used for this study. In-depth interviews were conducted with 19 participants who were non-mainstream practitioners from five traditional systems of medicine - Traditional Chinese Medicine,Ayurveda, Naturopathy, Homeopathy and Western Herbal Medicine. Four main conceptual categories were identified: Losing Control of the CAM Occupational Domain (the participants' main concern); Personal Positioning; Professional Positioning (the core category); and Legitimacy.These categories formed the elements of the substantive theory of 'becoming accepted' as a legitimate health care provider in the mainstream health system, which explained the basic social process that the study's participants were using to resolve their main concern.