Handicap Hospital Research Articles

Medical and social support for children with disabilities in hospitals

Children constitute a special category among the disabled and people with disabilities. Restoration or compensation of impaired functions cannot be achieved in full, but thanks to medical and social support and technical means of rehabilitation, adaptation to existing living conditions, it is possible to achieve a higher level of quality of life. Medical and social support for children with disabilities is considered from the perspective of the available resource potential of the hospital system itself - the competent application of medical and social technologies and the functional capabilities of inpatient or semi-stationary type institutions. The leading criterion for evaluating the effectiveness of medical and social support for children with disabilities in hospital and semi-stationary care was the criterion of satisfaction of the medical and social needs of rehabilitators and their family members (parents/legal representatives). The author used analysis of documents, questioning of children with disabilities and parents (legal representatives) to identify needs, assessment of satisfaction of medical and social needs of children with disabilities and their parents (legal representatives) using comprehensive medical and social support (interviewing). In the course of the work, the purpose of the study was achieved – a sociological analysis of medical and social support for children with disabilities was carried out. Based on the research data, it can be concluded that the most relevant in meeting the needs of children with disabilities in hospital and semi-hospital settings are the socio-pedagogical and socio-psychological components of medical and social support, while the medical and social components fade into the background. The explicit needs must be met not through a ready-made solution, but by teaching the child himself to accept and work with them until an optimal level of compensation is achieved, the use of medical and social support technology as a system in hospital and semi-stationary conditions, on the one hand, has stable invariance properties, on the other, has variability.

Being a child with intellectual disabilities in hospital: The need for an individualised approach to care.

There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents. The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

What do healthcare staff think about the quality and safety of care provided to children and young people with an intellectual disability? A qualitative study using the framework method of analysis

ObjectiveTo elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient...

Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study

Background To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature. Aims To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts. Design A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff. Methods Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings. Data analysis A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics. Results Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set. Conclusions Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being. Future work The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital. Limitations We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability. Study registration The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4). Funding This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.

'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.

AimTo understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff.DesignInterpretive qualitative study.MethodsFocus 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.ResultsSix 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.ConclusionIncluding 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.ImpactThe 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.

Responding to safe care: Healthcare staff experiences caring for a child with intellectual disability in hospital. Implications for practice and training.

Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic analysis. Eleven of the 735 publications extracted identified the following themes: distress, communication, partnerships, identification, training and education and optimising care. Consistent findings suggest that HCS feel unskilled in providing care for the child with intellectual disability in hospital settings. HCS recognised the role of parents as experts of their child but also feel unsettled when challenged by them. Skills in communicating with the child, developing partnerships with parents, having identification systems to plan for reasonable adjustments was key to improving care. Organisational advocacy, practical skills training in identification, reasonable adjustments and improved attitudes are important for HCS to provide safe and quality care.

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, p<0.001) and cost of admission (A$11 596.38 vs A$8497.96) than their peers (p=0.001). Children with intellectual disability had more admissions with at least one incident compared to children without intellectual disability (14.7% vs 9.7%); this was not statistically significant (p=0.06).InterpretationChildren 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.

Behavioral assessment and faded bedtime intervention for delayed sleep-onset in an adult with autism spectrum disorder

Faded bedtime has been evaluated as a behavioral intervention for delayed sleep-onset principally with children and youth who have intellectual and developmental disabilities in hospital and home settings. The present case report describes behavioral assessment and faded bedtime intervention in a 21-year old adult man with autism spectrum disorder at a community-based group home. The study also documented the effects of family home visits on the man’s sleep when he returned to the group home. Compared to a pre-intervention (baseline) phase, faded bedtime was associated with increased intervals of recorded sleep and a decrease in sleep-onset latency over several months of implementation. We discuss clinical implications of the case and generality of findings across populations and settings.

Creating equitable healthcare quality and safety for children with intellectual disability in hospital

Children with intellectual disability are susceptible to poor experiences of care and treatment outcomes, and this may compound existing health inequities. Evidence to date indicates three priority areas that must be addressed in order to reduce these inequities in the safety and quality of care for children with intellectual disability. Firstly, we need reliable methods to identify children with intellectual disability so that healthcare organizations understand their needs. Secondly, we need to develop quality metrics that can assess care quality and unwarranted care variation for children with intellectual disability in hospital. Finally, for a comprehensive understanding of the safety and quality of care for these children, and how to improve, it is critical that healthcare organizations partner with parents/carers and enable children with intellectual disability to voice their experiences of care. Children with intellectual disability have higher healthcare utilization than their peers; yet, their voice is rarely sought to optimize the safety and quality of their healthcare experience. Patient experience narratives enhance our understanding of the genesis of adverse events. By addressing these priorities, children with intellectual disability will be identified, and health services will measure and understand the problematic and beneficial variations in care delivery and can then effectively partner with children and their parents/carers to address the inequities in care quality and create safer healthcare.

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

ObjectiveTo systematically identify and synthesize peer‐reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability.Search strategyKey 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 criteriaEmpirical 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 synthesisData were extracted and synthesized using a meta‐narrative approach.ResultsEleven 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 conclusionThis 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.

Improving equality in healthcare for people with learning disabilities: a joint working approach between housing and hospital

Purpose The current project aims to draft an NHS and care provider joint working protocol for patients with learning disabilities as they transition between care and NHS hospital services. The purpose of this paper is to present the rationale behind a joint working protocol and the progress of the project to date. Design/methodology/approach Working in partnership, Basildon University Hospital and Estuary Housing Association have sought to investigate the experiences in hospital of the people they support with learning disabilities. This has involved ongoing work examining patient pathways from both a hospital and care provider perspective as well as engaging in discussions with key stakeholders. It is hoped that these insights will feed into recommendations to form the joint working protocol. Findings Current findings are limited as this paper presents an interim report on an ongoing project. Initial findings around positive joint working practices are detailed. An emerging recommendation around improved information sharing between health and care provider in acute hospital settings is also discussed. Originality/value It is hoped that the project will improve experiences of people with learning disabilities in hospital locally, while inspiring other hospitals and care providers to adopt a joint working approach at a wider level.

"LEARN"ing what is important to children and young people with intellectual disabilities when they are in hospital.

The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital-related needs and experiences of CYP with intellectual disabilities. An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate.

Laceration of Both Angles of Mouth Caused by Harmful Behavior between Persons with Intellectual Disability in Hospital

Laceration of Both Angles of Mouth Caused by Harmful Behavior between Persons with Intellectual Disability in Hospital

Safety of People with Intellectual Disabilities in Hospital. What Can the Hospital Pharmacist Do to Improve Quality of Care?

People with intellectual disabilities are vulnerable in healthcare environments. They experience health and healthcare inequalities, and when admitted to general hospitals are at a greater risk of patient safety incidents. This is well known in specialist services, but less recognized within primary or secondary healthcare. The most significant barriers to safer and better healthcare appear to include ‘invisibility’ of people with intellectual disabilities within health-care systems, widespread lack of staff understanding of intellectual disability, the vulnerabilities of people with intellectual disabilities, and the reasonable adjustment they may need in order to access health-care services. They may be ‘invisible’ to pharmacists in general hospitals. This article aims to raise awareness among those pharmacists and others providing care and support to people with intellectual disabilities in hospital in relation to how pharmacists can contribute to safety. Medication is the main therapeutic intervention in this population. Research is needed to determine the role of pharmacists in improving health outcomes and reducing health inequalities in this vulnerable population group when they are admitted to general hospitals.

Improving the care of children with learning disabilities in hospital

Emeritus Professor Alan Glasper, from the University of Southampton, discusses care delivery for children with learning disabilities or autism who require a hospital stay, prompted by the recent Lenehan report.

A narrative review of acute care nurses' experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers.

To describe how nurses experience caring for people with intellectual disability in an acute care setting. Recent advances in the care of people with intellectual disability in hospital are primarily based upon the experiences of people with intellectual disability and their caregivers. Little is known about the experiences of registered nurses caring for people with intellectual disability, yet the experiences of nurses in delivering care largely determine the quality of care experienced by people with intellectual disability and their caregivers. A narrative literature review using electronic database searches was conducted using variants of the terms disability, nursing and acute care. Through our reading of the recent literature describing the experiences of nurses caring for people with intellectual disability in an acute care setting, we have identified three themes: (1) nurses feel underprepared when caring for patients with intellectual disability, (2) nurses experience challenges when communicating with people with intellectual disability and (3) nurses have ambiguous expectations of paid and unpaid caregivers. The enablers of and barriers to the delivery of nursing care in acute care settings need to be made explicit and researchers and nurses need to collaborate in the development, implementation and evaluation of care delivery strategies. Nurses need to be adequately prepared to care for people with intellectual disability. Preparation should include dealing with the complexities of communicating with people with intellectual disability and practical experience of doing so in clinical and educational environments that ensure the safety and dignity of nurses and people with intellectual disability. Nurses need supportive strategies for developing therapeutic relationships with a range of informal and formal caregivers.

The 4C framework for making reasonable adjustments for people with learning disabilities.

Background People with learning disabilities experience significant inequalities in accessing healthcare. Legal frameworks, such as the Equality Act 2010, are intended to reduce such disparities in care, and require organisations to make 'reasonable adjustments' for people with disabilities, including learning disabilities. However, reasonable adjustments are often not clearly defined or adequately implemented in clinical practice. Aim To examine and synthesise the challenges in caring for people with learning disabilities to develop a framework for making reasonable adjustments for people with learning disabilities in hospital. This framework would assist ward staff in identifying and managing the challenges of delivering person-centred, safe and effective healthcare to people with learning disabilities in this setting. Method Fourth-generation evaluation, collaborative thematic analysis, reflection and a secondary analysis were used to develop a framework for making reasonable adjustments in the hospital setting. The authors attended ward manager and matron group meetings to collect their claims, concerns and issues, then conducted a collaborative thematic analysis with the group members to identify the main themes. Findings Four main themes were identified from the ward manager and matron group meetings: communication, choice-making, collaboration and coordination. These were used to develop the 4C framework for making reasonable adjustments for people with learning disabilities in hospital. Discussion The 4C framework has provided a basis for delivering person-centred care for people with learning disabilities. It has been used to inform training needs analyses, develop audit tools to review delivery of care that is adjusted appropriately to the individual patient; and to develop competencies for learning disability champions. The most significant benefit of the 4C framework has been in helping to evaluate and resolve practice-based scenarios. Conclusion Use of the 4C framework may enhance the care of people with learning disabilities in hospital, by enabling reasonable adjustments to be made in these settings.

The effect of vestibular rehabilitation on sleep disturbance in patients with chronic dizziness

Conclusions: Improvement in sleep, emotional distress, and health-related quality-of-life (QoL) accompanied the improvement in dizziness symptoms after vestibular rehabilitation. Persistent sleep disturbance could prevent improvements in self-perceived handicap due to chronic dizziness and anxiety.Objective: The present study investigated prospectively the effects of intervention for dizziness (vestibular rehabilitation) on sleep disturbance, and the relationship between improvements in dizziness symptoms and improvements in sleep disturbance after the intervention.Methods: The participants of this study were 127 chronic dizziness inpatients with comorbid sleep disturbance (Pittsburgh sleep quality index [PSQI-J] global score ≥6). Participants completed the Dizziness Handicap Inventory (DHI, three sub-scales: Physical, Emotional, and Functional), PSQI-J, Hospital Anxiety and Depression Scale (HADS), and SF-8 (health-related QoL), and underwent gravity center fluctuation measurement before (time 1) and 1 month after (time 2) an in-hospital rehabilitation program.Results: All measured variables were significantly improved at time 2, compared to time 1. At time 2, 80.31% of patients still reported sleep disturbance. Analysis of covariance showed that chronic dizziness patients with sleep disturbance at time 2 had significantly higher DHI total, DHI-physical, and HADS-anxiety scores at time 2 than patients without sleep disturbance at time 2, after adjusting for these scores at time 1.

Falls risk assessment for hospitalised older adults: a combination of motion data and vital signs.

Health monitoring systems have rapidly evolved during the past two decades and have the potential to change the way healthcare is currently delivered. Currently hospital falls are a major healthcare concern worldwide because of the ageing population. Current observational data and vital signs give the critical information related to the patient's physiology, and motion data provide an additional tool in falls risk assessment. These data combined with the patient's medical history potentially may give the interpretation model high information accessibility to predict falls risk. This study aims to develop a robust falls risk assessment system, in order to avoid falls and its related long-term disabilities in hospitals especially among older adults. The proposed system employs real-time vital signs, motion data, falls history and other clinical information. The falls risk assessment model has been tested and evaluated with 30 patients. The results of the proposed system have been compared with and evaluated against the hospital's falls scoring scale.

Menschen mit geistigen und mehrfachen Behinderungen in der akut-stationären Versorgung

National and international publications indicate a higher importance of people with disabilities in health and nursing care. From the international literature it can be seen that for this target group the hospital care is to be regarded as deficient in many ways. This project intends to study on a qualitative exploratory basis experiences of employees of outpatient and residential care facilities for people with mental and multiple disabilities and family members of the target group concerning their experiences in health and nursing care. 21 guided interviews with employees of outpatient and in-patient residential facilities for people with mental and multiple disabilities and family members of the target group were conducted. 21 interviews could be evaluated according to Grounded Theory with the software program MAXQDA. The results show above all that in the perception and from the experience of the interviewees mainly a "lack" exists in the care of the target group, e. g., in time, staff, resources, qualification, cooperation and so forth. Employees of outpatient and inpatient residential facilities for people with mental and multiple disabilities and family members must contribute to a high degree to the care in hospitals, so that nursing and health measures are performed. The results point to an inadequate care of people with disabilities in hospitals. It is necessary to reflect critically on the medical and nursing care and to develop adequate measures, concepts, interventions and policies.