Patient safety vulnerabilities for children with intellectual disability in hospital: A systematic review and narrative synthesis

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. Purpose Adults and children with intellectual disability (ID) are vulnerable to preventable morbidity and mortality due to poor quality healthcare. While poor quality care has been commonly identified among children with ID, evidence of the patient safety outcomes for this group is lacking and therefore explored in this review. Data sources Systematic searches of six electronic bibliographic research databases were undertaken from January 2000 to October 2017, in addition to hand searching. study selection Keywords, subject headings and MeSH terms relating to the experience of iatrogenic harm during hospitalisation for children with ID were used. Potentially relevant articles were screened against the eligibility criteria. Non-English language papers were excluded. Data extraction Data regarding: author(s), publication year, country, sample, health service setting, study design, primary focus and main findings related to measures of quality and safety performance were extracted. results of data synthesis Sixteen studies met the inclusion criteria, with three themes emerging: the impact of the assumptions of healthcare workers (HCWs) about the child with ID on care quality and associated safety outcomes; reliance on parental presence during hospitalisation as a protective factor; and the need for HCWs to possess comprehensive understanding of the IDs experienced by children in their care, to scientifically deduce how hospitalisation may compromise their safety, care quality and treatment outcomes. Conclusion: When HCWs understand and are responsive to children's individual needs and their ID, they are better placed to adjust care delivery processes to improve care quality and safety during hospitalisation for children with ID

Partnerships for safe care: A meta-narrative of the experience for the parent of a child with Intellectual Disability in hospital

© 2019 The Authors. Health Expectations published by John Wiley & Sons Ltd. Objective: To systematically identify and synthesize peer-reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability. Search strategy: Key words, synonyms and MeSH subject headings that related to the three key concepts of parental experience, children with Intellectual Disability and hospital settings were applied to six electronic databases: Medline, CINAHL, Embase, PsycINFO, Scopus and Web of Science. Titles and abstracts of publications between January 2000 and February 2019 were screened for relevance. Inclusion criteria: Empirical qualitative research involved participants aged 0-18 years, involved children with Intellectual Disability, involved participants hospitalized as an in-patient and involved participants focused on parent perspective. Data extraction and synthesis: Data were extracted and synthesized using a meta-narrative approach. Results: Eleven publications met the inclusion criteria. Data synthesis revealed three research traditions contributing to this meta-narrative: Paediatric Nursing Practice, Intellectual Disability Healthcare and Patient Experience. A total of five themes were identified: (a) being more than a parent, (b) importance of role negotiation, (c) building trust and relationships, (d) the cumulative effect of previous experiences of hospitalization and (e) knowing the child as an individual. Discussion and conclusion: This review presents a working model for professional-parent partnership for the safe care of children with Intellectual Disability in hospital. Shifting paediatric healthcare to whole of hospital/multidisciplinary models of care that centre on the child will necessitate partnerships with the parent to identify and manage the needs of the child with Intellectual Disability, in order to achieve safe and equitable care for these children

Inequities in quality and safety outcomes for hospitalized children with intellectual disability.

AimTo investigate if there are inequities in quality and safety outcomes for children with intellectual disability admitted to two tertiary paediatric hospitals.MethodA cross-sectional study of 1367 admissions for 1018 randomly selected patients admitted for more than 23 hours to one of two tertiary children's hospitals in Sydney, Australia (1st January-31st December 2017). Electronic medical records were manually interrogated to identify children with intellectual disability (including developmental delay). Data extracted included patient demographics, length of stay, number of admissions, and reported clinical incidents.ResultsIn total, 12.3% (n=125) of children admitted during the study period had intellectual disability, which represented 13.9% (n=190) of admissions. Sex and age at admission in children with and without intellectual disability were similar: 83 (43.7%) vs 507 (43.1%) females and 107 (56.3%) vs 670 (56.9%) males, p=0.875; median age 3 years (0-18y) vs 4 years (0-18y), p=0.122. Children with intellectual disability had significantly greater median length of stay (100.5h vs 79h, pInterpretationChildren with intellectual disability experience inequitable quality and safety outcomes in hospital. Engaging children and families in clinical incident reporting may enhance understanding of safety risks for children with intellectual disability in hospital

'Smiles and laughter and all those really great things': Nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability.

AIM: To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff. DESIGN: Interpretive qualitative study. METHODS: Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care. RESULTS: Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID-19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. CONCLUSION: Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/family and the hospital systems and processes. IMPACT: The enhanced model offers a specialized framework for clinical staff and health managers to optimize the delivery of safe care for children and young people with intellectual disability in hospital

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

Abstract Introduction Children and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements. Methods and analysis This study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital. Ethics and dissemination This study was granted ethical approval on 1 February 2021 by the Sydney Children’s Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee

Playing Muller Games in a Hurry

This work studies the following question: can plays in a Muller game be stopped after a finite number of moves and a winner be declared. A criterion to do this is sound if Player 0 wins an infinite-duration Muller game if and only if she wins the finite-duration version. A sound criterion is presented that stops a play after at most 3^n moves, where n is the size of the arena. This improves the bound (n!+1)^n obtained by McNaughton and the bound n!+1 derived from a reduction to parity games

Imitation in Large Games

In games with a large number of players where players may have overlapping objectives, the analysis of stable outcomes typically depends on player types. A special case is when a large part of the player population consists of imitation types: that of players who imitate choice of other (optimizing) types. Game theorists typically study the evolution of such games in dynamical systems with imitation rules. In the setting of games of infinite duration on finite graphs with preference orderings on outcomes for player types, we explore the possibility of imitation as a viable strategy. In our setup, the optimising players play bounded memory strategies and the imitators play according to specifications given by automata. We present algorithmic results on the eventual survival of types

Coinductive subtyping for abstract compilation of object-oriented languages into Horn formulas

In recent work we have shown how it is possible to define very precise type systems for object-oriented languages by abstractly compiling a program into a Horn formula f. Then type inference amounts to resolving a certain goal w.r.t. the coinductive (that is, the greatest) Herbrand model of f. Type systems defined in this way are idealized, since in the most interesting instantiations both the terms of the coinductive Herbrand universe and goal derivations cannot be finitely represented. However, sound and quite expressive approximations can be implemented by considering only regular terms and derivations. In doing so, it is essential to introduce a proper subtyping relation formalizing the notion of approximation between types. In this paper we study a subtyping relation on coinductive terms built on union and object type constructors. We define an interpretation of types as set of values induced by a quite intuitive relation of membership of values to types, and prove that the definition of subtyping is sound w.r.t. subset inclusion between type interpretations. The proof of soundness has allowed us to simplify the notion of contractive derivation and to discover that the previously given definition of subtyping did not cover all possible representations of the empty type

Exploiting the Temporal Logic Hierarchy and the Non-Confluence Property for Efficient LTL Synthesis

The classic approaches to synthesize a reactive system from a linear temporal logic (LTL) specification first translate the given LTL formula to an equivalent omega-automaton and then compute a winning strategy for the corresponding omega-regular game. To this end, the obtained omega-automata have to be (pseudo)-determinized where typically a variant of Safra's determinization procedure is used. In this paper, we show that this determinization step can be significantly improved for tool implementations by replacing Safra's determinization by simpler determinization procedures. In particular, we exploit (1) the temporal logic hierarchy that corresponds to the well-known automata hierarchy consisting of safety, liveness, Buechi, and co-Buechi automata as well as their boolean closures, (2) the non-confluence property of omega-automata that result from certain translations of LTL formulas, and (3) symbolic implementations of determinization procedures for the Rabin-Scott and the Miyano-Hayashi breakpoint construction. In particular, we present convincing experimental results that demonstrate the practical applicability of our new synthesis procedure

Formats of Winning Strategies for Six Types of Pushdown Games

The solution of parity games over pushdown graphs (Walukiewicz '96) was the first step towards an effective theory of infinite-state games. It was shown that winning strategies for pushdown games can be implemented again as pushdown automata. We continue this study and investigate the connection between game presentations and winning strategies in altogether six cases of game arenas, among them realtime pushdown systems, visibly pushdown systems, and counter systems. In four cases we show by a uniform proof method that we obtain strategies implementable by the same type of pushdown machine as given in the game arena. We prove that for the two remaining cases this correspondence fails. In the conclusion we address the question of an abstract criterion that explains the results