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1.
BMC Health Serv Res ; 24(1): 99, 2024 Jan 18.
Artigo em Inglês | MEDLINE | ID: mdl-38238747

RESUMO

BACKGROUND: The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption. METHODS: The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care. RESULTS: Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.). CONCLUSIONS: This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals. TRIAL REGISTRATION: NCT02400528, registered 27/03/2015.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Pré-Escolar , Humanos , Atenção à Saúde , Pessoas com Deficiência/reabilitação , Nível de Saúde , Deficiência Intelectual/terapia , Estudos Longitudinais
2.
Molecules ; 29(11)2024 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-38893576

RESUMO

Rare tautomeric forms of nucleobases can lead to Watson-Crick-like (WC-like) mispairs in DNA, but the process of proton transfer is fast and difficult to detect experimentally. NMR studies show evidence for the existence of short-time WC-like guanine-thymine (G-T) mispairs; however, the mechanism of proton transfer and the degree to which nuclear quantum effects play a role are unclear. We use a B-DNA helix exhibiting a wGT mispair as a model system to study tautomerization reactions. We perform ab initio (PBE0/6-31G*) quantum mechanical/molecular mechanical (QM/MM) simulations to examine the free energy surface for tautomerization. We demonstrate that while the ab initio QM/MM simulations are accurate, considerable sampling is required to achieve high precision in the free energy barriers. To address this problem, we develop a QM/MM machine learning potential correction (QM/MM-ΔMLP) that is able to improve the computational efficiency, greatly extend the accessible time scales of the simulations, and enable practical application of path integral molecular dynamics to examine nuclear quantum effects. We find that the inclusion of nuclear quantum effects has only a modest effect on the mechanistic pathway but leads to a considerable lowering of the free energy barrier for the GT*⇌G*T equilibrium. Our results enable a rationalization of observed experimental data and the prediction of populations of rare tautomeric forms of nucleobases and rates of their interconversion in B-DNA.


Assuntos
Pareamento de Bases , Guanina , Aprendizado de Máquina , Simulação de Dinâmica Molecular , Prótons , Teoria Quântica , Timina , Guanina/química , Timina/química , DNA/química , Termodinâmica
3.
J Appl Res Intellect Disabil ; 37(4): e13245, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38770887

RESUMO

BACKGROUND: It can be challenging for support staff to develop meaningful moments of interaction with people with profound intellectual disabilities. Gathering information on observable behaviour characterising such meaningful moments is expected to be beneficial. METHOD: Three staff-client dyadic interactions were videotaped for 30 min. During reviewing the recording, staff members indicated which moments of interaction they experienced as meaningful. Per dyad, one meaningful moment was microanalytically coded via a developed coding system, and behaviourally described. RESULTS: The coding system reliably coded behaviour at the micro level. Exploratory results indicated that looking, movement and touching were most shown, and that staff displayed this behaviour more frequently than their clients. Both exhibited behaviours substantially more often during meaningful moments than at their onset. DISCUSSION: People with profound intellectual disabilities are more engaged during meaningful moments of interaction compared to at their onset. In daily practice, cultivating circumstances increasing their involvement is important.


Assuntos
Deficiência Intelectual , Relações Profissional-Paciente , Humanos , Adulto , Masculino , Feminino , Pessoa de Meia-Idade , Adulto Jovem
4.
Int J Mol Sci ; 24(2)2023 Jan 12.
Artigo em Inglês | MEDLINE | ID: mdl-36675059

RESUMO

The nature of intra- and intermolecular non-covalent interactions was studied in four naphthalene derivatives commonly referred to as "proton sponges". Special attention was paid to an intramolecular hydrogen bond present in the protonated form of the compounds. The unsubstituted "proton sponge" served as a reference structure to study the substituent influence on the hydrogen bond (HB) properties. We selected three compounds substituted by methoxy, amino, and nitro groups. The presence of the substituents either retained the parent symmetry or rendered the compounds asymmetric. In order to reveal the non-covalent interaction properties, the Hirshfeld surface (HS) was computed for the crystal structures of the studied compounds. Next, quantum-chemical simulations were performed in vacuo and in the crystalline phase. Car-Parrinello molecular dynamics (CPMD), Path Integral Molecular Dynamics (PIMD), and metadynamics were employed to investigate the time-evolution changes of metric parameters and free energy profile in both phases. Additionally, for selected snapshots obtained from the CPMD trajectories, non-covalent interactions and electronic structure were studied. Quantum theory of atoms in molecules (QTAIM) and the Density Overlap Regions Indicator (DORI) were applied for this purpose. It was found based on Hirshfeld surfaces that, besides intramolecular hydrogen bonds, other non-covalent interactions are present and have a strong impact on the crystal structure organization. The CPMD results obtained in both phases showed frequent proton transfer phenomena. The proton was strongly delocalized in the applied time-scale and temperature, especially in the PIMD framework. The use of metadynamics allowed for tracing the free energy profiles and confirming that the hydrogen bonds present in "proton sponges" are Low-Barrier Hydrogen Bonds (LBHBs). The electronic and topological analysis quantitatively described the temperature dependence and time-evolution changes of the electronic structure. The covalency of the hydrogen bonds was estimated based on QTAIM analysis. It was found that strong hydrogen bonds show greater covalency, which is additionally determined by the proton position in the hydrogen bridge.


Assuntos
Automóveis , Prótons , Ligação de Hidrogênio , Simulação de Dinâmica Molecular , Entropia
5.
J Appl Res Intellect Disabil ; 36(5): 966-977, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37339925

RESUMO

BACKGROUND: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer. AIM: To gain understanding of the nature and development of tacit knowledge between persons with PIMD and their caregivers. METHOD: We conducted an interpretative synthesis of literature on tacit knowledge in caregiving dyads with persons with PIMD, persons with dementia or infants. Twelve studies were included. RESULTS: Tacit knowledge is about caregivers and care-recipients becoming sensitive and responsive to each other's cues and together crafting care routines. Learning takes place in a constant process of action and response that transforms those involved. CONCLUSION: Building tacit knowledge together is necessary for persons with PIMD to learn to recognise and express their needs. Suggestions are made for ways to facilitate its development and transfer.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Pessoas com Deficiência Mental , Humanos , Cuidadores
6.
J Appl Res Intellect Disabil ; 36(3): 653-663, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-36915941

RESUMO

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD. METHODS: We developed an instruction protocol for the assessment of pain-related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter-rater reliability (Cohen's kappa or percentage of agreement). RESULTS: The developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter-rater reliability (n = 9: .30-1.00; n = 3: 85%-100%). DISCUSSION: Calibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Humanos , Adulto , Medição da Dor/métodos , Reprodutibilidade dos Testes , Dor/diagnóstico
7.
Angew Chem Int Ed Engl ; 62(41): e202306744, 2023 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-37561837

RESUMO

Quantum mechanics dictates that nuclei must undergo some delocalization. In this work, emergence of quantum nuclear delocalization and its rovibrational fingerprints are discussed for the case of the van der Waals complex HHe 3 + ${{\rm{HHe}}_3^ + }$ . The equilibrium structure of HHe 3 + ${{\rm{HHe}}_3^ + }$ is planar and T-shaped, one He atom solvating the quasi-linear He-H+ -He core. The dynamical structure of HHe 3 + ${{\rm{HHe}}_3^ + }$ , in all of its bound states, is fundamentally different. As revealed by spatial distribution functions and nuclear densities, during the vibrations of the molecule the solvating He is not restricted to be in the plane defined by the instantaneously bent HHe 2 + ${{\rm{HHe}}_2^ + }$ chomophore, but freely orbits the central proton, forming a three-dimensional torus around the HHe 2 + ${{\rm{HHe}}_2^ + }$ chromophore. This quantum delocalization is observed for all vibrational states, the type of vibrational excitation being reflected in the topology of the nodal surfaces in the nuclear densities, showing, for example, that intramolecular bending involves excitation along the circumference of the torus.

8.
BMC Health Serv Res ; 22(1): 228, 2022 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-35183187

RESUMO

BACKGROUND: People with profound intellectual and multiple disabilities (PIMD) have combined severe intellectual and physical disability and need extensive health care support. They cannot communicate by spoken language and need around the clock support. The health care for people with PIMD is typically provided by a number of different health care services in collaboration with residential care staff and their managers. The quality of health care for people with PIMD are important due to their limited ability to communicate their needs. The aim of this study was to explore residential care staff and manager's experiences and views of health care services for adults with PIMD. METHODS: Thirteen semi-structured interviews with residential care staff (n = 7) and managers (n = 6) were conducted and analysed using qualitative content analysis. RESULTS: The informants expressed a variety of experiences, under the theme was Quality of health care is enhanced through residential care staff. The theme was comprised of four subthemes: (1) Individually tailored support promotes quality, (2) Accessibility requires adaptation and prioritization by healthcare providers, (3) Disability competence promotes quality and safety and (4) Complex collaboration conditions between the person with PIMD, residential care staff and disability health care. CONCLUSIONS: The residential care staff create quality of care in their role as representatives for adults with PIMD. The care situation is complex and requires adequate competence in the disability, the individual's needs and adaptations to ensure quality of health care. It is also important to build collaboration with other services that are involved in the care of people with PIMD.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Adulto , Atenção à Saúde , Humanos , Deficiência Intelectual/terapia , Qualidade da Assistência à Saúde , Suécia
9.
Int J Mol Sci ; 23(4)2022 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-35216257

RESUMO

The experimental and theoretical description of premelting behavior is one of the most challenging tasks in contemporary material science. In this paper, n-octanol was studied using a multi-method approach to investigate it at macroscopic and molecular levels. The experimental infrared (IR) spectra were collected in the solid state and liquid phase at temperature range from -84∘C to -15 ∘C to detect temperature-related indicators of pretransitional phenomena. Next, the nonlinear dielectric effect (NDE) was measured at various temperatures (from -30 ∘C to -15 ∘C) to provide insight into macroscopic effects of premelting. As a result, a two-step mechanism of premelting in n-octanol was established based on experimental data. It was postulated that it consists of a rotator state formation followed by the surface premelting. In order to shed light onto molecular-level processes, classical molecular dynamics (MD) was performed to investigate the time evolution of the changes in metric parameters as a function of simulation temperature. The applied protocol enabled simulations in the solid state as well as in the liquid (the collapse of the ordered crystal structure). The exact molecular motions contributing to the rotator state formation were obtained, revealing an enabling of the rotational freedom of the terminal parts of the chains. The Car-Parrinello molecular dynamics (CPMD) was applied to support and interpret experimental spectroscopic findings. The vibrational properties of the stretching of OH within the intermolecular hydrogen bond were studied using Fourier transformation of the autocorrelation function of both dipole moments and atomic velocity. Finally, path integral molecular dynamics (PIMD) was carried out to analyze the quantum effect's influence on the bridged proton position in the hydrogen bridge. On the basis of the combined experimental and theoretical conclusions, a novel mechanism of the bridged protons dynamics has been postulated-the interlamellar hydrogen bonding pattern, resulting in an additional OH stretching band, visible in the solid-state experimental IR spectra.


Assuntos
1-Octanol/química , Hidrogênio/química , Análise de Fourier , Ligação de Hidrogênio , Simulação de Dinâmica Molecular , Prótons , Teoria Quântica , Vibração
10.
Int J Mol Sci ; 23(22)2022 Nov 08.
Artigo em Inglês | MEDLINE | ID: mdl-36430173

RESUMO

It is postulated that the overexpression of Carbonic Anhydrase isozyme IX in some cancers contributes to the acidification of the extracellular matrix. It was proved that this promotes the growth and metastasis of the tumor. These observations have made Carbonic Anhydrase IX an attractive drug target. In the light of the findings and importance of the glycoprotein in the cancer treatment, we have employed quantum-chemical approaches to study non-covalent interactions in the binding pocket. As a ligand, the acetazolamide (AZM) molecule was chosen, being known as a potential inhibitor exhibiting anticancer properties. First-Principles Molecular Dynamics was performed to study the chalcogen and other non-covalent interactions in the AZM ligand and its complexes with amino acids forming the binding site. Based on Density Functional Theory (DFT) and post-Hartree-Fock methods, the metric and electronic structure parameters were described. The Non-Covalent Interaction (NCI) index and Atoms in Molecules (AIM) methods were applied for qualitative/quantitative analyses of the non-covalent interactions. Finally, the AZM-binding pocket interaction energy decomposition was carried out. Chalcogen bonding in the AZM molecule is an important factor stabilizing the preferred conformation. Free energy mapping via metadynamics and Path Integral molecular dynamics confirmed the significance of the chalcogen bond in structuring the conformational flexibility of the systems. The developed models are useful in the design of new inhibitors with desired pharmacological properties.


Assuntos
Calcogênios , Neoplasias , Humanos , Anidrase Carbônica IX/química , Ligantes , Inibidores da Anidrase Carbônica/farmacologia , Inibidores da Anidrase Carbônica/química , Acetazolamida/farmacologia , Acetazolamida/química , Calcogênios/química
11.
Molecules ; 27(7)2022 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-35408698

RESUMO

The intra- and intermolecular interactions of selected quinolone carboxylic acid derivatives were studied in monomers, dimers and crystals. The investigated compounds are well-recognized as medicines or as bases for further studies in drug design. We employed density functional theory (DFT) in its classical formulation to develop gas-phase and solvent reaction field (PCM) models describing geometric, energetic and electronic structure parameters for monomers and dimers. The electronic structure was investigated based on the atoms in molecules (AIM) and natural bond orbital (NBO) theories. Special attention was devoted to the intramolecular hydrogen bonds (HB) present in the investigated compounds. The characterization of energy components was performed using symmetry-adapted perturbation theory (SAPT). Finally, the time-evolution methods of Car-Parrinello molecular dynamics (CPMD) and path integral molecular dynamics (PIMD) were employed to describe the hydrogen bond dynamics as well as the spectroscopic signatures. The vibrational features of the O-H stretching were studied using Fourier transformation of the autocorrelation function of atomic velocity. The inclusion of quantum nuclear effects provided an accurate depiction of the bridged proton delocalization. The CPMD and PIMD simulations were carried out in the gas and crystalline phases. It was found that the polar environment enhances the strength of the intramolecular hydrogen bonds. The SAPT analysis revealed that the dispersive forces are decisive factors in the intermolecular interactions. In the electronic ground state, the proton-transfer phenomena are not favourable. The CPMD results showed generally that the bridged proton is localized at the donor side, with possible proton-sharing events in the solid-phase simulation of stronger hydrogen bridges. However, the PIMD enabled the quantitative estimation of the quantum effects inclusion-the proton position was moved towards the bridge midpoint, but no qualitative changes were detected. It was found that the interatomic distance between the donor and acceptor atoms was shortened and that the bridged proton was strongly delocalized.


Assuntos
Teoria Quântica , Quinolonas , Ácidos Carboxílicos , Ligação de Hidrogênio , Simulação de Dinâmica Molecular , Compostos Orgânicos , Prótons
12.
Molecules ; 27(24)2022 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-36557978

RESUMO

The hydrogen bonds properties of 2,6-difluorobenzamide, 5-hydroxyquinoline and 4-hydroxybenzoic acid were investigated by Car-Parrinello and path integral molecular dynamics (CPMD and PIMD), respectively. The computations were carried out in vacuo and in the crystalline phase. The studied complexes possess diverse networks of intermolecular hydrogen bonds (N-H…O, O-H…N and O-H…O). The time evolution of hydrogen bridges gave a deeper insight into bonds dynamics, showing that bridged protons are mostly localized on the donor side; however, the proton transfer phenomenon was registered as well. The vibrational features associated with O-H and N-H stretching were analyzed on the basis of the Fourier transform of the atomic velocity autocorrelation function. The spectroscopic effects of hydrogen bond formation were studied. The PIMD revealed quantum effects influencing the hydrogen bridges providing more accurate free energy sampling. It was found that the N…O or O…O interatomic distances decreased (reducing the length of the hydrogen bridge), while the O-H or N-H covalent bond was elongated, which led to the increase in the proton sharing. Furthermore, Quantum Theory of Atoms in Molecules (QTAIM) was used to give insight into electronic structure parameters. Finally, Symmetry-Adapted Perturbation Theory (SAPT) was employed to estimate the energy contributions to the interaction energy of the selected dimers.


Assuntos
Prótons , Quinolinas , Ligação de Hidrogênio , Ácido Benzoico , Hidrogênio , Benzamidas , Teoria Quântica
13.
Molecules ; 27(4)2022 Feb 11.
Artigo em Inglês | MEDLINE | ID: mdl-35209010

RESUMO

n-Octanol is the object of experimental and theoretical study of spectroscopic signatures and intermolecular interactions. The FTIR measurements were carried out at 293 K for n-octanol and its deuterated form. Special attention was paid to the vibrational features associated with the O-H stretching and the isotope effect. Density Functional Theory (DFT) in its classical formulations was applied to develop static models describing intermolecular hydrogen bond (HB) and isotope effect in the gas phase and using solvent reaction field reproduced by Polarizable Continuum Model (PCM). The Atoms in Molecules (AIM) theory enabled electronic structure and molecular topology study. The Symmetry-Adapted Perturbation Theory (SAPT) was used for energy decomposition in the dimers of n-octanol. Finally, time-evolution methods, namely classical molecular dynamics (MD) and Car-Parrinello Molecular Dynamics (CPMD) were employed to shed light onto dynamical nature of liquid n-octanol with emphasis put on metric and vibrational features. As a reference, CPMD gas phase results were applied. Nuclear quantum effects were included using Path Integral Molecular Dynamics (PIMD) and a posteriori method by solving vibrational Schrödinger equation. The latter applied procedure allowed to study the deuterium isotope effect.

14.
J Appl Res Intellect Disabil ; 34(6): 1521-1537, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34137122

RESUMO

BACKGROUND: Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with PIMD. METHOD: Professionals (N = 148) from three European countries completed a survey on assessment practices. We performed a literature search to find information about the psychometric properties of the instruments that were identified in the survey. RESULTS: Of the participants, 78.1% used assessments that were not developed for people with PIMD. Documentation on psychometric properties was found for 8 out of 116 instruments. CONCLUSIONS: Most of the instruments in use were not designed for people with PIMD, and information about their quality is lacking. Guidelines are needed regarding the use and development of assessment methods for people with PIMD.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Europa (Continente) , Humanos , Psicometria , Inquéritos e Questionários
15.
J Appl Res Intellect Disabil ; 34(1): 250-262, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33073444

RESUMO

BACKGROUND: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. METHODS: The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the "voice" of persons with PIMD and (f) theoretical models. RESULTS: Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field. CONCLUSIONS: The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Humanos
16.
J Appl Res Intellect Disabil ; 33(6): 1141-1150, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32367663

RESUMO

BACKGROUND: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. METHOD: We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. RESULTS: Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. CONCLUSIONS: Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.


Assuntos
Crianças com Deficiência , Deficiência Intelectual , Criança , Família , Humanos , Pais , Relações Profissional-Família
17.
J Intellect Disabil Res ; 58(8): 721-33, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23870049

RESUMO

BACKGROUND: Few studies examined joint attention in interactions with people with profound intellectual and multiple disabilities (PIMD), although being an important component of high-quality interaction. The purpose of this study is to describe initiating joint attention behaviour from people with PIMD and their support workers as well as the sequential relationship between initiating joint attention behaviour and attention episodes in spontaneous interactions. METHOD: Video observations of 28 support worker-client dyads were coded using partial interval coding. RESULTS: Results show much variation across persons and dyads. Within the support worker-client dyad, there is not much joint attention but shared attention is frequently occurring. In general, people with PIMD are directing the attention of their interaction partner at low rates. The support workers are frequently directing the attention of the clients towards a topic of interest but not often through the tactile modality. The occurrence of an attention episode cannot be predicted on the basis of preceding initiating joint attention behaviour of the interaction partners. CONCLUSION: This study presents directions for future research and implications for practice. It may increase support workers' knowledge of their own contributions, strengths and weaknesses in directing and maintaining attention within interactions with people with PIMD.


Assuntos
Atenção/fisiologia , Pessoas com Deficiência/psicologia , Deficiência Intelectual/psicologia , Relações Profissional-Paciente , Adolescente , Adulto , Criança , Pré-Escolar , Pessoas com Deficiência/reabilitação , Feminino , Humanos , Deficiência Intelectual/reabilitação , Masculino , Pessoa de Meia-Idade , Adulto Jovem
18.
Cureus ; 15(9): e45506, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37868450

RESUMO

When percutaneous endoscopic gastrostomy (PEG) is not feasible owing to anatomical obstacles, laparotomic or laparoscopic gastrostomy (LAG) is an alternative. At our institution, LAG has been the first choice for patients who are unable to undergo PEG; however, we have introduced a small open gastrostomy through a 2-cm-long transverse incision since 2020. By December 2022, 12 patients had undergone this procedure without complications. In one case where the stomach was located cephalad to the rib arch and the patient had a round dorsum, the incision wound was extended, and a lengthy operation was required. We believe that our small-incision gastrostomy is a useful option in addition to LAG for cases in which PEG is difficult to perform. Further studies are required to determine the indications for this procedure.

19.
Int J Dev Disabil ; 69(4): 487-504, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37346263

RESUMO

This scoping review addresses peer-reviewed research on musical interaction with children and young people with severe/profound intellectual and multiple disabilities (S/PIMD). Twenty-five articles published between the years 2000 and 2020 met the inclusion criteria. A narrative synthesis was used to summarise and evaluate different features, including participant characteristics, study design and methods, type of musical interaction, the abilities and behaviours in focus, reported benefits, promising components of musical interaction, and quality appraisal of the studies. The results revealed a variation in participant characteristics and study designs, where small-sample descriptive case studies were most common. In terms of the type of musical interaction, active music therapy was the most commonly used approach, followed by technology-mediated and multisensory musical activities. In terms of abilities and behaviours, a large majority of the studies focused on social interaction and communication, followed by engagement, attention and affect. Six categories were identified as promising components of musical interaction: the responsivity of the interaction partner, singing songs, structure and predictability in the activities, long-term interventions, technology-mediated and multisensory musical activities, and a therapeutic alliance between interaction partners. Based on this review, we discuss future research and practical implications for musical interaction and music therapy for children and young people with S/PIMD.

20.
J Commun Disord ; 104: 106337, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37253298

RESUMO

INTRODUCTION: This study examines longitudinal changes in communicative behavior of young children with significant cognitive and motor developmental delays (SDD) and determines their individual communicative trajectories. A second focus of this study is the relation of changes in communicative behavior with motor skills. METHODS: Data consists of codes resulting from a self-developed coding scheme used on observations of 23 children in three different settings and responses on a questionnaire. First, group trends were determined to find out whether communication-related variables tend to significantly change over the course of two years. Furthermore, these findings were contrasted with the individual trajectories of the children. Next, the association of initial communicative skills and (the acquisition of) specific motor skills with the change in their communicative functioning was studied. Wilcoxon Signed Ranks and correlational analyses were used to answer the research questions. RESULTS: Out of sixteen different variables related to communicative behavior, ten changed significantly over the course of two years. Children with more focus on prompt on the first datapoint showed a significantly larger increase of signs of functionality. Still, all children showed highly individual trajectories. Children with better motor skills on the first datapoint showed a significantly larger increase in communication rate. CONCLUSIONS: Results show that if a myriad of detailed variables are taken into account children with significant cognitive and motor developmental disabilities do change regarding their communicative functioning, but that they tend to all show unique developmental trajectories. Children with stronger skills in some aspects of communication and motor functioning, can be considered advantaged regarding their communicative development.


Assuntos
Desenvolvimento Infantil , Destreza Motora , Humanos , Criança , Pré-Escolar , Desenvolvimento Infantil/fisiologia , Destreza Motora/fisiologia , Comunicação , Cognição
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