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

BACKGROUND: 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. AIM: 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. METHODS: 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. RESULTS AND CONCLUSIONS: 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

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

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England : a mixed methods national study

Background Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies13. What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. Methods Individual interviews (n=65) and anonymised online survey (n=2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Ethics approval was obtained and verbal or written consent for data collection was obtained from all interview participants. Results The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. Conclusion Findings indicate inequality with regards the provision of high quality hospital care to children and young people with intellectual disabilities that meets their needs. There is a pressing need to understand the impact this has on them and their families.</p

A class II MHC-targeted vaccine elicits immunity against SARS-CoV-2 and its variants

The pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has resulted in over 100 million infections and millions of deaths. Effective vaccines remain the best hope of curtailing SARS-CoV-2 transmission, morbidity, and mortality. The vaccines in current use require cold storage and sophisticated manufacturing capacity, which complicates their distribution, especially in less developed countries. We report the development of a candidate SARS-CoV-2 vaccine that is purely protein based and directly targets antigen-presenting cells. It consists of the SARS-CoV-2 Spike receptor-binding domain (SpikeRBD) fused to an alpaca-derived nanobody that recognizes class II major histocompatibility complex antigens (VHHMHCII). This vaccine elicits robust humoral and cellular immunity against SARS-CoV-2 and its variants. Both young and aged mice immunized with two doses of VHHMHCII-SpikeRBD elicit high-titer binding and neutralizing antibodies. Immunization also induces strong cellular immunity, including a robust CD8 T cell response. VHHMHCII-SpikeRBD is stable for at least 7 d at room temperature and can be lyophilized without loss of efficacy

Exploring cellular biochemistry with nanobodies

© 2020 Cheloha et al. Published under exclusive license by The American Society for Biochemistry and Molecular Biology, Inc. Reagents that bind tightly and specifically to biomolecules of interest remain essential in the exploration of biology and in their ultimate application to medicine. Besides ligands for receptors of known specificity, agents commonly used for this purpose are monoclonal antibodies derived from mice, rabbits, and other animals. However, such antibodies can be expensive to produce, challenging to engineer, and are not necessarily stable in the context of the cellular cytoplasm, a reducing environment. Heavy chain-only antibodies, discovered in camelids, have been truncated to yield single-domain antibody fragments (VHHs or nanobodies) that overcome many of these shortcomings. Whereas they are known as crystallization chaperones for membrane proteins or as simple alternatives to conventional antibodies, nanobodies have been applied in settings where the use of standard antibodies or their derivatives would be impractical or impossible. We review recent examples in which the unique properties of nanobodies have been combined with complementary methods, such as chemical functionalization, to provide tools with unique and useful properties

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

© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Background: 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. Aim: 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. Methods: 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. Results and Conclusions: 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.Peer reviewe

Rate and Characteristics of Incompletely Excised Cutaneous Squamous Cell Carcinoma: A Dermatological Daily Practice Multicenter Prospective Cohort Study

BACKGROUNDIncomplete excision of squamous cell carcinoma (cSCC) is associated with an increased risk of recurrence, metastasis, and mortality.OBJECTIVETo determine the rate and characteristics of incompletely excised cSCC in a dermatological daily practice setting.METHODSProspective study of all patients who gave informed consent, with a cSCC treated with standard excision (SE) at 1 of 6 Departments of Dermatology in the Netherlands between 2015 and 2017. Pathological reports were screened to detect all incompletely excised cSCCs.RESULTSA total of 592 patients with 679 cSCCs were included, whereby most cases were low risk cSCC (89%). The rate of incompletely excised cSCC was 4% (n = 26), and the majority were high-risk cSCCs of which 24 invaded the deep excision margin.CONCLUSIONThis prospective study showed that in a dermatological setting, the risk of an incompletely excised cSCC is low (4%) for a cohort that was dominated by low-risk cSCCs. Most incompletely excised cSCCs were of high risk, and incompleteness was almost always at the deep margins. These results suggest that for high-risk cSCC, one should pay attention especially to the deep margin when performing SE, and/or microscopic surgery should be considered

Rate and Characteristics of Incompletely Excised Cutaneous Squamous Cell Carcinoma: A Dermatological Daily Practice Multicenter Prospective Cohort Study

BACKGROUND: Incomplete excision of squamous cell carcinoma (cSCC) is associated with an increased risk of recurrence, metastasis, and mortality. OBJECTIVE: To determine the rate and characteristics of incompletely excised cSCC in a dermatological daily practice setting. METHODS: Prospective study of all patients who gave informed consent, with a cSCC treated with standard excision (SE) at 1 of 6 Departments of Dermatology in the Netherlands between 2015 and 2017. Pathological reports were screened to detect all incompletely excised cSCCs. RESULTS: A total of 592 patients with 679 cSCCs were included, whereby most cases were low risk cSCC (89%). The rate of incompletely excised cSCC was 4% (n = 26), and the majority were high-risk cSCCs of which 24 invaded the deep excision margin. CONCLUSION: This prospective study showed that in a dermatological setting, the risk of an incompletely excised cSCC is low (4%) for a cohort that was dominated by low-risk cSCCs. Most incompletely excised cSCCs were of high risk, and incompleteness was almost always at the deep margins. These results suggest that for high-risk cSCC, one should pay attention especially to the deep margin when performing SE, and/or microscopic surgery should be considered